journal of prospective health care volume 1

Laying Down the tracksIssue 1

JOURNAL OF PROSPECTIVE HEALTH CARE

A Publication of the Duke Prospective Health Care Club

But even as we type these words, we are asking our-selves, “What next?” We are still a long way off from a fully realized Prospective Health Care system. And though our vision has become a bit clearer, we know that we cannot change medicine overnight—not with one conference, not with one journal. But we believe that each of these steps counts.

We’re laying down the tracks for a big change in medicine.

We would like to thank:Ziggy Yoediono, MD, MBARalph Snyderman, MDHuntington Willard, PhDGeorge Truskey, PhD, and Philip Benfey, PhD.

When eleven Duke undergraduate students first met on a cold night in November 2005, all of us knew that something big was about to happen. None of us really knew what the term Prospective Health Care entailed, and many of us were non-science majors. But these eleven founding mem-bers of the Duke Prospective Health Care Club shared one thing: the desire to implement change for the future of medicine. Since then, Prospective Health Care has become our passion and our vision.

That is not to say that our vision has always been clear. On the contrary, first, we grappled with the definition of Prospective Health Care, and then we asked, “How exactly do we go about changing the face of medicine?” We were still in basic premedical courses, still students ourselves—and there we were, proposing grandiose plans. We wanted to rejuvenate medi-cal school education to be more predictive rather than reactive. We rejected the idea of a one-size-fits-all approach to patients. We were agitated by the pervasiveness of chronic diseases, despite advances in medical knowledge and technology.

Indeed, our vision was nebulous, and our aims, lofty. That’s never stopped us.

With less than a year and a half of experience, our club has organized the Second Annual Prospective Health Care Conference, created a half-credit undergraduate course on this mode of medicine, and taught health and ten-nis classes at the Durham Nativity School. And now, we proudly present to you the inaugural issue of the Journal of Prospective Health Care. Inside, you will find original student work investigating the genetic, cultural, and geographic influences on health as well as the transcript of an interview with Dr. Ralph Snyderman, Chancellor Emeritus for Health Affairs and the founder of the Center for Research on Prospective Health Care.

From the Editorial Board

EDITORS

Myung KoAngela Munasque

Charles WangJosephine LiMax Masnick

Varun Gokarn Crystan Dowds

Cover Photo: Nate Rohdy, Creative Commons

Table of Contents

Interview with Ralph Snyderman, M.D.by Parker Goyer and Myung Ko

Prospective Health Care Research Briefsby Angela Munasque

Personalized Medicine and Religion: Christian Science and the Right to Refuse Medical Treatment

by Alessandra Colaianni

Misunderstanding of Genetic Information Related to Alzheimer’s Disease: Take Heed, Would-Be Revolutionaries

by Marisa Adelson

An Analysis of Juvenile Dentition and Dental Health in Costa Rican Indigenous Communities

by Alfredo García and Christina Guzzo

Debating the Merits of Genomic Testingin Prospective Health Care

by Charles Wang

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Prospective Health Care Club: Prospective health care is often touted as a multidisciplinary ap-proach to health care, but getting different disciplines to work togeth-er is easier said than done. How do you see these different levels of so-ciety and health—patients, doctors, corporations, the government, and even students like us—working to-gether to contribute to the common goals of prospective health care?

Ralph Snyderman: Certainly the complexity of the current health system and the problems are such that it would be very difficult for any given entity, any given related party, to solve it by themselves. In order for the system to be changed, I believe there needs to be collabo-ration amongst willing, interested, and far-sighted individuals who represent the needs of patients and who look into what [patients] really want from the health care system. [These] individuals need to define what they consider to be a more practical, if not an ideal, system and say, “We’re going to try this out as a pilot project.”

PHCC: What would such a pilot project look like?

RS: [The] pilot project will have to have appropriate mechanisms of funding that are very different from

Interview with Ralph Snyderman, M.D. By Parker Goyer and Myung Ko

Ralph Snyderman, M.D., the Chancellor Emeritus for Health Affairs at Duke University, is a leading visionary in prospective medicine, a personalized and preventive approach to medicine. Since stepping down as the Chancel-lor of Health Affairs at Duke and the Chair of the Association of American Medical Colleges, he has devoted him-self to educating the academic community on the issues facing prospective medicine. To highlight Dr. Snyderman’s goals for the future of medicine, the Journal of Prospective Health Care met with him and conducted this interview.

be a major force in convening in-tellectual firepower from a broad range of disciplines to give a far better description [than I have giv-en] of an implementable plan for a prospective health care system. There is a lot of interest in facilitat-ing such a movement.

PHCC: What do you think about the recent interest in promoting the principles of prospective health care among undergraduates here?

[model] to the entire system.

PHCC: Do you perceive Duke as a major leader in the development of prospective health care?

RS: Duke is a large provider which would clearly like to do things dif-ferently and better, and I definitely think Duke is capable of playing a leadership role in envisioning what this system will look like. I hope that in the coming years Duke will

Photograph provided by the Office of the Chancellor Emeritus, Duke University

what we currently have today, which reward, as we know, treatment of late-stage disease. It will have to be a model where the rewards to providers are based on prevention, elim-ination of problems, treating problems at the earliest time, [and] providing pa-tients with the sup-port that they need to be more involved in their health care. I think if people in-clude these elements in a pilot project and determine what works and doesn’t work over a period of time, then gradu-ally we can shift this

Featured Article Featured Article

Journal of Prospective Health CareSpring 2007

RS: Undergraduate involvement to me is one of the most invigorating and encouraging signs of the even-tual success of this movement. It indicates to me that people who are, in general, at the healthiest stages of their life, have sufficient foresight to be doing things now to keep them healthy as long as possible. Frequently, the highest percentage of people who are unin-sured are students and early gradu-ates. They especially stand to gain from a system that is fair and af-fordable for everyone.

PHCC: How do you envision un-dergraduates contributing to the prospective health care move-ment?

RS: I think that students will come at this from a fresh perspective that is very different from the ingrained perspectives that are already, in many ways, responsible for the current system that we have. So I think students will be able to add a lot of insight. If you look at any of the great movements in our so-ciety, students have often been the leaders. The prospective health care movement, in particular, has the potential to have a tremendous societal impact. The eagerness and enthusiasm students can bring to this movement will go a long way toward empowering and en-abling people broadly to have bet-ter health.

PHCC: As members of the under-graduate Prospective Health Care Club at Duke, our main goal has been to increase awareness about prospective health care, since it is a fairly new concept. We have also been trying to implement a few key

PHCC: What do you think are the biggest obstacles in implementing a prospective approach to health care?

RS: The tools have not yet been developed to enable people to have their own personal health plans and to meet the obstacles that will arise from the greater use of tech-nology that prospective health care requires. Among patients, educa-tion and motivation are critical. People in general are not knowl-edgeable enough about the way certain foods affect their health. In addition, sometimes what is good for you is not easily available. Mo-tivating people to make a daily ef-fort to work towards developing or maintaining good health will be a struggle. For physicians, the re-imbursement system is key. It is almost impossible to go beyond a highly segmented application of prospective principles because ev-eryone in the system is so focused on practicing medicine the way it is reimbursed now. The common excuse is that there are not enough people with enough time to do the things that need to be done to fix what is broken. However, if people from all sectors make a serious ef-fort to get together and ask them-selves “what do we need to do to turn this system around?” then real change is possible. Undergraduates at Duke in particular are brilliant, well-motivated, and capable of do-ing great things.

projects, such as starting an under-graduate journal and setting up op-portunities for students to educate those in the local community. Are there any specific projects which you would like to see undergradu-ates take on?

RS: Undergraduates should be ask-ing themselves, “What can we do about [the current problems], even if we are not able to bring about a major transformation in the health care system?”. Part of this will in-volve creating a well-understood consumer movement that is recog-nized by politicians. The best thing students can do is let people in the government know that students are knowledgeable about this topic and have ideas about better ways to provide health care. Students can also focus on the things that people can do for themselves. In the Dur-ham community, specifically, there is a high rate of childhood obesity and obesity-onset diabetes, espe-cially among people with the least economic resources. There is a real need for projects in the com-munity devoted to tackling these problems.

PHCC: Can you give us an exam-ple of such a project?

RS: When I was chancellor we de-veloped a project called “Promising Practices,” which involved taking a group of obesity-onset diabetes in-dividuals to the grocery store and showing them how to read labels while shopping. We worked with the Steadman Nutrition Center in the Center for Living. It would be great if Duke students could coor-dinate similar initiatives.

Featured Article Featured Article

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PREDICTING RISK Researchers led by Svati Shah, M.D., suggested at the annual scientific sessions of the American Heart Associa-tion in November 2006 that metabolomics can lead to the earlier identification of cardiovascular disease. Metabolomics is the study of metabolites, the byproducts of cellular processes. Shah and her team studied five extended families with a history of early cardiovascular disease and found that certain metabolites have greater heritability estimates. Researchers led by Stephan Zuchner, M.D., have discovered two mutations in the SLITRK1 gene that cause trichotillomania, a psychiatric disorder that is characterized by compulsive hair-pulling and falls within the obsessive-com-pulsive spectrum. Although only approximately four percent of the population is affected by trichotillomania, this finding proves the existence of biological factors for this mental disorder and provides hope for better diagnostic tools.

PREVENTING DISEASE Researchers led by Edward Suarez, Ph.D., have found that a combination of negative personality traits, such as anger, hostility, and anxiety, increases the risk for developing coronary heart disease more than any of the traits alone. This study highlights the importance of prevention and early intervention strategies that emphasize coping skills and minimiz-ing these negative personality traits. Researchers led by Bernard Fuemmeler, Ph.D., concluded that the majority of Americans support employer and health care policy changes aimed at preventing obesity. This study was conducted via telephone surveys. Respondents favored tax breaks for employers who offered worksite exercise facilities and government regulations that would require insurance companies to cover obesity prevention and treatment programs.

PERSONALIZED PLAN Researchers led by Anil Potti, M.D., have developed tests that use gene expression signatures to gauge the chemo-therapeutic sensitivity of tumors. The tests were 80% accurate in predicting which drugs would be most effective against patients’ tumors. The researchers stressed that these tests can make the difficult task of matching the appropriate individual with the appropriate treatment much easier. Researchers led by Timothy J. Strauman, Ph.D., have created self-system therapy (SST), a new form of psy-chotherapy aimed at treating a specific type of depression. Approximately one-fifth of depressed patients have difficulty identifying and pursuing promotion goals, which involve advancement, growth, and achievement. Strauman and his team found that SST was more effective than traditional cognitive therapy for this subgroup of depressed individuals.

PATIENT RESPONSIBILITY Researchers led by Judith Kramer, M.D., have found in a study of more than 17,000 patients who had recently suffered a heart attack that less than half adhered to prescribed beta-blocker therapy despite carrying commercial health insurance. Results also reveal that falloff in adherence begins early; thus, the researchers propose that interventions be implemented within the first two months after a heart attack. This study implies that there are more factors than cost that determine adherence to treatment. Health care providers led by Samuel Warburton, M.D., seek to involve diabetic patients in their own care through the Academic Chronic Care Collaborative (ACCC), which is composed of 22 academic centers. Statistics from Duke’s two ACCC sites show that there have been increases in flu shot, foot exam, and monofilament utilization among diabetic patients since August 2005.

Please refer to http://www.duke.edu/web/phcc/ for references to this article.

Prospective Health Care Research BriefsBy Angela Munasque

All around Duke University, research is being conducted that furthers the goals of Prospective Health Care—even if it does not set out to do any such thing. In diverse fields, from oncology to psychiatry to community health, Duke profes-sionals are making possible the widespread implementation of a predictive, preventive, personalized and patient-involved health care program. Here are a few of the most current Duke research projects related to Prospective Health Care.

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INTRODUCTION One of the fundamental prin-ciples of prospective health care is the notion of personalization. Personalized health care is generally thought of as tailoring a treatment regimen to a pa-tient based on genetic information—a well-known example of this is the use of Herceptin to treat breast cancer in patients whose tumor cells express a certain protein. However, personalized health care extends far beyond gene-specific medicine. For a patient’s per-sonalized health care plan to be maxi-mally effective, it must consider both medical and non-medical factors, in-cluding the patient’s lifestyle, beliefs, and religion. Especially significant are beliefs that denounce certain types of treatment, as they can seriously impact health care. However, if beliefs are to be taken into account by health care providers, the question of whether and when these beliefs should outweigh the recommendations of doctors must be addressed. In this paper, I will ex-amine how the beliefs of Christian Scientists affect their health care, spe-cifically with respect to the children of Christian Scientists.

BACKGROUND Christian Science (CS) was founded in 1879 by Mary Baker Eddy. She claimed to have been healed sud-denly from injuries sustained from a severe fall through prayer and reading of the Bible’s New Testament.1 One of the central tenets of CS is that “…dis-eases and sickness are manifestations of the mind that can be overcome only by praying and drawing closer to God.”2 Members of the CS faith refuse medical treatment for diseases of any kind, relying instead on prayer and “practitioners” (general faith healers trained in prayer, spiritual healing, and basic wound care and bandaging) to

cure their ills. As of 1999, the church reported approximately half a million members in the U.S.3 The views of the CS church pose significant ethical questions to the medical community, particularly in situations when CS parents wish to deny medical treatment for a young child. Issues of autonomy, freedom of religion, and child abuse abound in such cases. Not surprisingly, in many cases, these children die untreated and/or undiagnosed. Medical and legal re-actions are not consistent or formulaic: they are decided on a case-by-case ba-sis, and many court rulings on CS cases have been overturned.4 As there is no consistent method of evaluating what should be done in these cases, the legal and medical outcomes vary widely and often are in direct opposition to other, previously decided cases. Because of the large (and growing) number of members of the CS faith in the U.S., it is important that a consistent method of evaluation of these cases be devel-oped so as to make future decisions better, quicker, and more consistent. In order to address this issue, I will discuss whether members of the CS faith should be allowed to refuse medical treatment for their young chil-dren on the basis of their religious be-liefs. I conclude, after analysis of three actual cases in which CS parents re-fused medical treatment for their chil-dren, that parental refusal of treatment on behalf of children is only supported when: 1) the efficacy of the treatment is uncertain, 2) the treatment’s harm to the child outweighs its benefit, or 3) the severity of the disease is sufficient-ly low that conventional medical treat-ment is not necessary for recovery.

PRELIMINARY ISSUES Before beginning the discus-sion of this question, there are three

important issues to clarify that will be important in my final analysis. First, although CS rejects medical treatment as antithetical to its central tenets, “…there is nothing in the doctrine to forbid anyone from seek-ing medical healing. Rather, there is a strong sense that when one does seek medical healing one has turned one’s back on the power of prayer.”5 Unlike the case of Jehovah’s Witnesses, then, there is no risk of excommunication or other official rebuke from CS authori-ties if medical treatment is sought. In fact, CS literature officially states that “when circumstances result in a child’s being brought under medical care, members of our Church would surely continue to cherish such a family and give them their full love and support during a challenging time.”6 This is important because it seems to remove the possibility of parental coercion in refusing medical treatment for their child: it is presented as a personal de-cision based on personal faith.7,8 Re-moval of the possibility of parental co-ercion allows us to view CS as simply a set of personal beliefs rather than a set of enforced beliefs. Second, CS routinely accepts some forms of medical treatment that they view to be solely “mechanical” in nature. They accept certain forms of orthopedic care (the setting and treat-ment of broken bones), dental care (including oral surgery), and in some cases, medical help during child deliv-ery (including anesthesia and Cesarean sections). They also officially support the use of medical equipment such as eyeglasses, crutches, and hearing aids.9 They do not dispute all medical treat-ment, only that which involves the treatment of disease, which they view as being more successfully treatable through prayer and spiritual methods.10 Importantly, medical help during child

Personalized Medicine and Religion: Christian Scienceand the Right to Refuse Medical Treatment

Alessandra ColaianniDepartment of Biology, Duke University

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Andrew’s initial complaint, his father called 911. Andrew was pronounced dead due to complications from juve-nile diabetes, a treatable condition.15

Shauntay Walker Laurie Grouard Walker, a Christian Scientist, did not seek medi-cal attention to treat her 4-year-old daughter’s flu-like symptoms and stiff neck, which persisted for 17 days. She contacted a CS Practitioner who visited Shauntay twice. Shauntay con-tinued to lose weight, becoming dis-oriented and irritable, and her flu-like symptoms continued. After deterio-rating for over two weeks, Shauntay died from what was determined to be meningitis, which (according to several physicians) would have been completely curable with antibiotics up until the day before she died.16,17

Colin Newmark In 1990, the health of Colin Newmark, a 3-year-old child of CS parents, began deteriorating rapidly. His parents reluctantly took him to a hospital and physicians recommend-ed extensive X-ray tests to determine what was wrong. The parents refused and took Colin home, but returned a few days later after his condition worsened. Tests showed that Colin had an intestinal blockage, which the parents agreed to have removed surgi-cally because they considered it “me-chanical” treatment. However, a path-ological report on the removed tissue showed that Colin had non-Hodgkin lymphoma, with a 40% chance of survival after treating aggressively with chemotherapy. Colin’s parents refused treatment and, after a court battle with the hospital, moved Colin into the care of a CS practitioner.18

ANALYSIS In order to clearly delineate the potential benefits and harms in-volved in refusing medical treatment for a child in a case similar to Walker and Wantland, I have constructed a Benefit/Harm table (Table 1).19

In general, this table shows clearly that withholding medical treat-ment from children causes unequivo-

cally more harm than does temporar-ily overriding the parents’ authority to choose what is best for their chil-dren. Withholding medical treatment causes the child pain, suffering, and death. Treating the child would cause the parents no direct consequences or penalties from the CS church (as dis-cussed in note 1), and at most would temporarily remove their authority over their children. Clearly, the harm done to the child by withholding med-ical treatment outweighs the harm to the parent by disregarding authority in cases where treatment has high effi-cacy. Thus, in most cases, CS parents should not be able to refuse medical treatment for their sick children. However, as the Wantland, Newmark, and Walker examples show, not all CS cases are this sim-ple, and there are important issues to consider on a case-by-case ba-sis. The efficacy of treatment is one such issue. There are numerous cases of non-CS parents exercising their right to take their terminally ill chil-dren home without subjecting them to chemotherapy, surgery with a low probability of success, or other types of invasive treatment of uncertain ef-ficacy, similar to the Newmark case discussed above.20 To allow non-CS parents this right and deny it to the Newmark parents on the basis of their religious beliefs is wrong, because it is clear discrimination.21 On the other hand, the conditions of the Walker and Wantland children were very treatable with traditional medicine, and to have denied them the medical treatment that would have saved them seems as wrong as denying them food or water. This is particularly true because their chances of survival after treatment were nearly 100%, and their chances of survival without treatment were close to zero. Thus, it is only when the efficacy of the treatment is uncertain that parents have the right to refuse that treatment for their children. A similar issue is that of the harm or burden of treatment weighed against its benefit. In the case of Co-lin Newmark, the potential harm of treatment included such serious side effects as a compromised immune

delivery was added to the list of ac-ceptable mechanical treatments after a highly publicized case in which a CS practitioner was prosecuted for the death of a mother and her newborn child.11 This shows that what counts as “mechanical” aid is not defined abso-lutely, but rather subjected to change. This is important because it shows in-ternal flexibility, which diminishes the absolute power of the “rules” against medical treatment. Finally, although it is tempt-ing to deny the validity of CS thought by referencing empirical study of the value of prayer in healing,12,13 the question addressed in this paper is not whether the CS doctrine is scientifi-cally correct, but whether it is ethical to allow parents to deny their children medical treatment.14 Denying the sci-entific validity of CS and discounting this way of thought would not solve this issue, but would exacerbate an already difficult situation between CS parents and physicians. Many CS parents now refuse even to get their young children diagnosed, due to fear that the physicians will then force them through the court system to accept appropriate medical treat-ment. This is detrimental to the goals of those on both sides of this issue, as neither CS members nor physicians want young children to suffer unnec-essarily. Thus, in order to move for-ward, for the purposes of this paper, we assume that CS beliefs are as valid as other beliefs by which we allow people to deny medical treatment.

CASES OF CS PARENTAL REFUSAL OF MEDICAL TREATMENTAndrew Wantland In December 1992, 12-year-old James Andrew Wantland began complaining of lethargy, frequent uri-nation, and weight loss. His father, a Christian Scientist, believed his son’s symptoms as transient and ignored them. Three days later, his father con-tacted a CS practitioner because An-drew was emaciated, vomiting, and eating very little. Two days later, An-drew was completely unresponsive, making no eye contact, and breathing rapidly. At this point, five days after

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system, kidney failure, hair loss, be-coming reproductively sterile (due to radiation), and neurological problems; the potential benefit was a 40% chance of survival.22 There are documented cases of non-CS parents refusing this type of treatment for their young children because of its invasiveness as well as its questionable efficacy.23 As discussed above, to preferentially deny CS parents this right is inequi-table and wrong. Thus, it is only when the benefit of treatment outweighs the harm of treatment that parents should have the right to refuse medical treat-ment on behalf of their children. Another key issue is disease severity. Common colds or stomach flu are good examples of low-severity diseases for which people do not al-ways seek medical attention. To force a CS parent to seek medical attention in a low-severity case while not re-quiring the same of a non-CS parent is wrong for the same reasons as stated above. Thus, in situations of low dis-ease severity, where medical attention is not necessary for recovery, parents should have the right to seek other treatment for their children. These are not the only impor-tant issues to consider (other examples are whether both parents are Christian Scientists, or complications that arise when stepparents or divorced couples are brought into the picture; whether CS parents have sought similar medi-cal attention in the past for themselves; whether the child is of sufficient age to make informed decisions), but they are relevant to almost every case.

CONCLUSION In general, CS parents should not be allowed to refuse medical treat-

ment on behalf of their children. The only instances in which parental re-fusal is justified are when: 1) the ef-ficacy of the treatment is uncertain, 2) the treatment’s harm to the child out-weighs its benefit, and 3) the severity of the disease is so low that conven-tional medical treatment is not neces-sary for recovery. While these prelim-inary guidelines for evaluating what should be done in CS cases are not fully developed or all-inclusive, this approach takes into consideration the variety and complexity of CS refusal cases, as well as the maintenance of a child’s right to health and the impor-tance of non-discrimination policies. These guidelines give health care providers a start for evaluating such ethical dilemmas. Awareness of when the wishes of the parents should and should not be overruled on the part of physicians could potentially avoid needless suffering for everyone involved. Additionally, if such beliefs are taken into account when formu-lating personalized health care plans, providers could emphasize the impor-tance of maintaining health with non-restricted measures and could instruct their patients in non-invasive treat-ment for common ailments. For per-sonalized medicine to be as effective as possible, non-medical factors such as CS beliefs must be considered.

REFERENCES / NOTES1) J.L. Hartsell, “Mother May I… Live? Parental Refusal of Life-Sustaining Medical Treatment for Children Based on Religious Objections.” Tenn. Law Rev. 66(2):499-530. (1999) p. 5032) E.A. Lingle, “Treating Children by Faith: Col-liding Constitutional Issues.” J. Legal Med. 17: 301- 330 (1996) p. 3063) J.L. Hartsell p. 504. A more accurate estimate is unavailable because the church does not keep membership records.4) E.A. Lingle pp. 312-318

5) L. May, “Challenging Medical Authority.” Hast-ings Center Report, 25(1):15-21 (1995) pp. 16-176) Christian Science Board of Directors, Qtd. in L. May pp. 16-177) “Healthcare decisions are always a matter of individual choice.” Official Website of Christian Science, http://www.tfccs.com/aboutchristianscience/index.jhtml (last accessed on May 2, 2006)8) Rita Swan, a former Christian Scientist whose son died of untreated bacterial meningitis, disputes this idea, asserting that “…she and her husband were pressured not to seek conventional medical care when their son became ill. She also notes that, prior to her son’s illness, she opted for sur-gery after a year of attempting to cure a cyst on her ovary through Christian Science methods. When she admitted to local church officials that she had been treated with conventional medicine, she was placed on probation and forced to resign from church offices.” Quoted in J.C. Merrick, “Chris-tian Science Healing of Minor Children: Spiritual Exemption Statutes, First Amendment Rights, and Fair Notice.” Issues in Law & Medicine 10(3): 321-342. (1994) p.325 9) J.C. Merrick p. 32510) J.C. Merrick pp. 325-32611) J.C. Merrick p. 32612) H. Benson et al “Study of the Therapeutic Effects of Intercessory Prayer (STEP) in cardiac bypass patients: A multicenter randomized trial of uncertainty and certainty of receiving intercessory prayer.” American Heart Journal 151(4):757-944 (2006)13) W.G. Braud, “Empirical Explorations of Prayer, Distant Healing, and Remote Mental In-fluence.” Journal of Religion and Psychical Re-search, 17(2):62-73 (1994)14) L. May p. 1515) Hickey KS, Lyckholm L. “Child welfare vs parental autonomy: medical ethics, the law, and faith-based healing.” Theor Med Bioeth.25(4):265-276(2004)p. 26616) Case paraphrased and court quoted in E.A. Lingle pp. 308-30917) Additional case information obtained from Walker vs. Supreme Court, available at http://online.ceb.com/calcases/C3/47C3d112.htm (last visited April 30, 2006)18) Case paraphrased from L. May pp.16-1819) For cases (such as bacterial meningitis, juve-nile diabetes, etc.) in which treatment is close to 100% effective, and no treatment results in near-certain death and suffering.20) M. Levetown, “Facing decisions about life and death--communication with parents.” Bioethics Forum. 18(3-4):16-22. (2002)21) An interesting side question, but beyond the scope of this paper, is why the medical commu-nity reacts so strongly to patients refusing treat-ment on the basis of religious beliefs when “the right of patients to forgo life-sustaining treatment has been well established in health law and medi-cal ethics.” (Quoted in L. May, p. 20) One pos-sible difference between religious beliefs and other personal beliefs is that religious beliefs are viewed to be “set” with little to no room for flexibility or circumstance. This idea could be the subject of an-other paper. Another is the possibility of coercion, which has been addressed with regard to CS at the beginning of this paper.22) L. May p. 1623) M. Levetown

Treatment No Treatment

Benefit (child) Does not die or suffer None

Harm(child)

Potential adverse side effects of treatment

Pain and suffering, death

Benefit(parent)

Child does not die, parent does not watch child suffer

Retains autonomy, retains personal faith

Harm(parent)

Authority ignored, potential questioning of personal faith

Loses a child, watches child in extreme suffering

Table 1: Benefit / Harm table for refusing medical treatment for a child

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INTRODUCTION Genetic testing has indeed been revolutionizing many aspects of modern medicine. Recent ad-vances in identifying the underly-ing genes that cause disease give doctors and patients information that could have never before been known with such certainty. With these benefits, though, come inevi-table costs. Access to genetic infor-mation by employers or insurance companies can result in employer discrimination in the workplace or prohibitively expensive premiums. Some insurance companies would attempt to file genetic information as “pre-existing conditions,” which may be covered less by the policy.1 In the United States, regulation of access to genetic information var-ies by state and ranges from dis-crimination prevention statutes on all insurance types to no regulation in three states.2 Information gained from genetic testing can also influ-ence people’s behaviors. A 2005 study found, for example, that in-dividuals who tested positive for genes that increase the likelihood of Alzheimer’s disease (AD) were 5.76 times more likely to purchase long term care insurance than those not tested.3 Genetic testing, along with other personalized health

measures, can lead to profound im-pacts on people’s behaviors and at-titudes. The recent increase in home health products may lead to increased consumer access to ge-netic information and problems that go along with it. A 2003 study found that the introduction of the “Do-it-yourself” dementia test to the general public resulted in “gen-eral public misunderstanding of the difference between a screening and a diagnostic test,” and lack of counseling for the self-diagnosed.4 Risk-related genetic information for complex diseases such as AD is arguably more difficult to under-stand than a questionnaire-style di-agnostic test. Thus, the problems in understanding genetic test results would likely be even greater. Many DNA testing labs now offer online mail-in services for determining paternity, maternity, ancestry, and other information; it is only a mat-ter of time before genetic testing for diseases becomes similarly ac-cessible to the public. Many genetic tests are not yet widely used now but may be in the future, making this time period crucial for research that anticipates the tests’ possible effects on behav-ior. One such area of research is the

media’s influence on public per-ceptions of genetic advancements. Discussion of genes is no longer limited to the realm of scientific journals; we now see mainstream media such as Time and The New York Times publishing articles on genetic information with glorious predictions of health care improve-ment. A recent issue of Newsweek included a major article on how genetic testing not only allows prevention of diseases, but also enables ground-breaking studies in affected individuals who do not yet show symptoms.5 Well-known scientists claim that mapping the genome will eradicate human ill-nesses; in 1999, Dr. Francis Collins said that the determination of the human genome would lead to “the development of rational strategies for minimizing or preventing dis-ease phenotypes altogether.”6 Non-scientist public figures also make highly optimistic claims about potential benefits of genetic medi-cine. Upon completion of the first full draft of the human genome, former President Bill Clinton said that “cancer would be the name for a cluster of stars in the sky” for future generations.7 In much of the media, a confident view of genetic medicine prevails.

Misunderstanding of Genetic InformationRelated to Alzheimer’s Disease:

Take Heed, Would-Be Revolutionaries Marisa Adelson

Terry Sanford Institute of Public Policy, Duke University.

“We are on the leading edge of a genuine revolution.” - Dr. Francis Collins, director of the U.S. National Human Genome Research Instiute, on the effects of recent genetic discoveries

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tual information to allow readers to evaluate the findings. Petersen noted that news stories rarely at-tributed the development of a disorder to more than one factor; instead, genes alone were blamed for the disease.10 AD displays this multifactorial nature, oversimpli-fied by the media, which could influence consumer perception of the effects of the apolipoprotein E (APOE) gene on AD. A study by Condit et al. on the influence of genetics-re-lated media examined the role of the headline on the reader’s view of the story. Three subjects read the same article; one group read the article without a headline, the second group read the article with a highly deterministic headline (i.e. Gene X causes Condition Y), and a third group read the article with a less deterministic headline. The research showed that gener-ally, participants accurately un-derstood that genes affect people in a probabilistic, non-definitive manner; the headline did not influ-ence the readers.8 As a result, Con-dit believed her study showed that the framing effect of headlines on affecting readers’ views is overes-timated. Although significant re-search exists on public under-standing of genetic information in the mass media, far less work has been done regarding understand-ing of personal genetic test results on an individual basis. Lock et al. summarize the predominant view of genetic knowledge uptake.

“Authors often assume that a relatively simple trickle-down process takes place as knowl-edge is passed from one domain to another, for example…from basic scientists to health-care professionals and then to pa-tients and…from basic scien-

tists to the media and then to the public at large. Embedded in this assumption lies another: that a uniform body of scientific knowledge exists and experts are in effect united in their un-derstanding about what types of action should be taken on the ba-sis of this knowledge.”11

Lock adds that social scientists have focused on understanding diseases that follow classic Men-delian patterns of inheritance such as Huntington’s; multifactorial diseases that strike late in life such as AD receive far less attention.11

In our research, we ad-dressed two often-neglected re-search areas: individual under-standing of their personal genetic information and of multifactorial, complex disorders. We examined basic understanding and recall of APOE test results, and identified factors that produce differences in recollection and comprehension. We found that recall and under-standing were relatively low in a population of high socioeconomic status. Furthermore, certain factors such as income and marital status as well as actual APOE test results correlated with variation in ability to both remember and understand genetic information. This analysis is crucial to designing better coun-seling programs and deciding how to regulate genetic data access.

BACKGROUND AD affects an ever-in-creasing number of Americans. By 2025, an estimated 17% of the U.S. population over 65 will suf-fer from the disease; in other coun-tries, this percentage may reach as high as 26%.12 Researchers have discovered a great deal about the role of the APOE gene on an in-dividual’s relative risk of devel-oping AD. The APOE gene codes

Some researchers believe these statements contribute to un-justifiably high optimism in the general public. Furthermore, ge-neticists fear that the public influx of increased information on genes’ effects may lead to an overly de-terministic view of human biolo-gy. That is, as researchers discover more gene-disease linkages, the public will come to wrongly view genes as directly responsible for all of their maladies and feel they are helpless to change their po-tential disease outcomes. In 1995, Nelkin and Lindee coined the term “genetic essentialism” to describe this phenomenon and argued that deterministic and discriminatory attitudes about genetics pervade the mass media.8 As a result of widespread genetic essentialism views, preventative disease man-agement may decrease if people see their medical fates sealed by their DNA alone. Several prior studies pres-ent conflicting views of genetic deterministic attitudes in the me-dia and amongst the public. Bube-la and Caufield analyzed the re-porting of single-gene discoveries in British, American, Canadian, and Australian newspapers from 1995 to 2001. They found that the majority of newspapers accurately reported the findings and did not exaggerate, contrary to the “geno-hype” media representations some critics describe. This finding con-tradicted the prevailing theory that genetic determinism had become more pervasive.9 In a narrower study that focused on three Austra-lian newspapers over a three-year period, sociologist Alan Petersen found that genetic research stories were prominent in all three news-papers and that these stories tended to depict genes as omnipotent and geneticists as heroic figures. Many of these stories also lacked contex-

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for a protein that is a precursor of the amyloid plaques that form in the brains of AD patients. Though the precise relationship between APOE gene expression and AD development is not fully known, the E4 allele of the APOE gene is thought to account for 45-60% of its genetic component. Heterozy-gous E4 carriers have about 2.2-4.4 times greater risk of developing AD than non-E4 carriers while ho-mozygous E4/E4 individuals have greater odds ratio between 5.1 and 34.3.13 The wide range of risk es-timates shows that the degree of E4’s effect is not uniform or fully understood. However, there is cor-relation between the presence of E4 and AD incidence amongst the general population. Although the E4 allele is a clinical indicator of increased AD risk, analysis of the genotypes of AD patients revealed seemingly counterintuitive results. A meta-analysis of AD studies found that at least one third of AD patients lacked an E4 allele, and up to half of E4/E4 individuals who lived to eighty did not develop the disease. Some researchers attribute this discrepancy to other factors such as family history, gender, and hor-mone levels. Also, the accuracy of E4 as an AD indicator was par-ticularly less in African-American than in Caucasian populations.13 The complex genetics of AD makes the effect of E4 (or lack thereof since other APOE al-leles may have a protective effect) difficult to explain to the public. Consumer-targeted publications sometimes present the informa-tion in confusing ways and may even directly contradict clinical findings. Doris Teichler Zallen’s self described “consumer’s guide to DNA testing” summarizes her view on the relationship between APOE and AD.

“For individuals with no E4 gene, the risk of developing Al-zheimer’s disease by age eighty is about 20 percent. Individu-als with just one copy of the E4 gene…have about a 45 percent chance of developing the dis-ease. Individuals who have in-herited two E4 genes have a 90 percent chance of developing the disease. The genetic predis-position associated with the E4 gene is thus quite substantial.”1

Zallen describes the findings in percentages, which the public may find easier to understand than odds ratios. However, her calculations are completely at odds with Farrer et al.’s findings. Zallen did not cite her sources or include a bibliogra-phy, so it is difficult to know how she concluded that 90% of E4/E4 individuals develop AD while other scientific articles cite this number as closer to 50%. Regard-less of differences in actual infor-mation, it is interesting to compare how sources present information to a consumer audience versus to scientific researchers.

STUDY METHODOLOGY The sample examined comes from the second data wave of the Risk Evaluation and Edu-cation for Alzheimer’s Disease (REVEAL) Study at Boston Uni-versity. This research examined the effects of genetic testing and subsequent counseling on adult children of AD sufferers.3 The re-search participants joined through either self-referral or their family’s pre-existing membership in one of several AD research registries. 247 participants remained in the study for the full 12-month period. All participants were given their APOE genetic test results and re-ceived counseling.

FINDINGS First, we determined the sociodemographic characteristics of the study group. As Table 1 shows, the study group was pre-dominantly composed of white females, and the participants had significantly higher yearly in-come and education levels than that of the U.S. population as a whole.14,15 According to the 2005 U.S. Census, median household income in the United States was $46,242 (U.S. Census 2005) and 27.2% of the population over age 25 has completed a bachelor’s de-gree. Furthermore, the relatively high rate of participants who were caregivers for AD patients implies that the issue of AD risk would be more salient since this population has had more personal experience with AD. We performed variable crosses to determine correlation between a variety of factors re-lated to the understanding and re-call of genetic information. This included a comparison of the par-ticipants’ abilities to remember their genotypes and to identify E4 as the harmful allele. Our analysis revealed that at 12 months, 9% of participants believed the wrong allele (either E2 or E3) was the harmful one, and 35% had for-gotten which one was the correct harmful allele. Essentially, nearly half of the participants did not state that E4 was the harmful al-lele. In the REVEAL II ques-tionnaire, two consecutive ques-tions asked about genotype us-ing different wording. The first question asked the participant to recall his or her exact genotype (i.e. E2/E3, E3/E4, etc.) while the second simply asked how many copies of the “harmful allele” the participant possessed. As seen ear-lier, a significant proportion of the

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28% of the group failed to remem-ber which one was correct. As we saw in other comparisons, the E4 negative group again showed the highest rate of error: 8% were in-correct and 40% did not remember that E4 was the harmful allele.

DISCUSSION AND POLICY IMPLICATIONS Technological advances in both communication and medicine have made access to genetic in-formation easier than ever. At the same time, mainstream media out-lets tout the benefits of such addi-tional knowledge. The message is clear: more information is better. Genetic tests only add to an ever-increasing body of helpful knowl-edge. But do they? Studies such as REVEAL have shown that testing and counseling efforts are moot if the patients do not understand the meaning of the information in the first place. In our research, we have shown that a significant propor-tion of people forget their genetic

information, which results in a waste of resources; these people are no better off than they were before the testing. More troubling are those who misunderstand or wrongly recall their genetic infor-mation rather than simply forget-ting it, thereby overestimating or underestimating their risk. For ex-ample, cross-examination of peo-ple’s actual genotypes with how many harmful alleles they thought they possessed showed that three E4-negative people thought they each had two E4 alleles, and 24 E4-negative people believed they each had one E4 copy. These peo-ple may mistakenly buy additional insurance or plan for the future thinking they are more likely to develop AD. The gaps present in both understanding and remembering genetic information related to AD risk show a need for improvements in genetic counseling. Specifically, the government or private agen-cies must develop improved ways to simplify complex genetic infor-

sample did not identify E4 as the “harmful allele” after 12 months. A comparison of the two questions shows that there was only a 36% congruency to the answers. As Table 2 illustrates, ac-tual genotype correlated with dif-ferences in both recall and under-standing of genetic information; in fact, it may make certain informa-tion more salient in participants’ minds. The higher the risk, the better people correctly recalled their test results. No one who ac-tually had two E4 alleles thought they had no alleles or forgot their genotype at 12 months; E4/E4 in-dividuals had the best recall rate. Four people, each with one E4 copy, actually thought they had no E4s, and eighteen people in the single E4 group did not remember their test results. Conversely, we also saw that seven people (near-ly 10%) in the single E4 group thought they had two E4 copies instead of one. The E4 negative group showed the greatest error rates; only 60% correctly recalled their number of harmful alleles. Twenty-seven people in the nega-tive group incorrectly believed they had one or two E4 alleles, and thirty-five (23% of the nega-tive group) forgot how many E4s they had after 12 months. Overall, after one year’s time, 38% of the sample was either wrong about or forgot how many harmful alleles they possessed. Table 2 also shows a link between a person’s actual geno-type and their likelihood of cor-rectly recalling the harmful allele. The vast majority (85%) of the E4/E4 group knew that the E4 allele was the harmful one. Rather than answering incorrectly, the remain-der of the group simply forgot. In the single copy E4 group, 11% were wrong about the harmful allele (answering E2 or E3), and

Demographic Characteristics PercentageFemale 71%

Currently married 57%White 75%

Income > $50,000 64%Past Alzheimer’s caregiver 29%

Mean education 16 years

Actual Genotype(number of E4s):

Percent that correctly recalled:Their

genotypeHow many “harmful

alleles” they hadWhich allele was harmful

Two E4s (highest risk) 77% 69% 85%One E4 (moderate risk) 71% 65% 61%

No E4s (no risk increase) 54% 60% 52%

Table 1: Sociodemographics of REVEAL II Participants

Table 2: Association Between Actual Test ResultsAnd Correct Recall of Genetic Information

Source: Risk Evaluation and Education for Alzheimer’s Disease (REVEAL II) Study

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mation enough for the public to fully understand. Understanding of risk is a complex process, and people tend to overestimate the likelihood of low-risk events (i.e. rare natural disasters) and under-estimate the chances that high-risk events such as AD will occur.16

A more thorough analysis of risk perceptions of AD can determine how accurately people assess their likelihood of developing AD. Considering that we worked with a significantly higher socioeconomic status group than the national population, it is likely that gaps in understanding of ge-netic information would be mag-nified in the general population. Thus, our findings underestimate the misunderstanding and recall problems that would occur on a broader scale. Even in this selected population, however, we observed sizeable disparities in comprehen-sion of genetic information. In the REVEAL II study, we showed that only just over half of the study group correctly identified E4 as the harmful allele after one year’s time, demonstrating that nearly half of the participants did not benefit from the genetic counsel-ing given. From a public health utili-tarian perspective, the relationship between high risk test results and better comprehension and recall (Table 2) shows that targeting those who test positive may yield a higher benefit. It is arguably more important for E4/E4 individuals to understand and remember they are at a significantly higher risk than for non-E4 individuals to know they are at a lower one. Since our research has shown that the high risk group is already more likely to remember and recall their genetic information, they may be more re-ceptive to counseling; focusing on them could be more cost-effective

on a wider epidemiological scale. Previous research found that adult children of AD patients asked about aluminum exposure as a possible cause of AD far more than they asked about the role of E4 and APOE, even though the media discussed both factors at around the same time.11 This im-plies that knowledge uptake may be more selective than previously thought; people may want to be-lieve that outside factors cause disease because these external features are within their control, whereas they cannot control their gene expression. This phenom-enon may also explain the higher levels of test-related distress seen in studies of women who test posi-tive for the BRCA1 gene, which increases risk for breast cancer. A review of genetic testing literature describes the fear of potential de-creases in cancer screening rates because of test-related distress in patients.17 The stress of knowing they possess a risk they cannot control may be too much for some people to bear. When addressing AD is-sues, we must remember that AD currently lacks effective therapy or a cure. Even ability to diagnose the disease is limited since it is estimated that less than half of all AD sufferers are diagnosed.18 Di-agnostic tools that do exist are not firmly established; some physi-cians and ethicists publicly recom-mended against the use of APOE genotyping as an Alzheimer’s di-agnostic tool.19, 20 Moreover, ge-netic technology progressed far faster than the research needed to understand its actual effects on society. Literature also shows an inconsistent relationship be-tween information and behavior. For example, researchers have consistently found a strong rela-tionship between newspaper cov-

erage and the degree of risk over-estimation.16 Based on the studies discussed in the introduction, the significant coverage of genetic ef-fects by mainstream media would cause people to overestimate their risk of developing certain diseases with genetic bases such as AD. Genetically tested people whose test information is salient would overestimate risk and be moti-vated to change their behavior at a higher rate than expected. We showed that saliency does play a role regarding genetic test re-sults, recall, and understanding. All these factors contribute to our recommendation that the APOE test be de-emphasized in clinical environments. Until more stable data is obtained regarding behav-ioral consequences and medicine improves clinical tools for AD di-agnosis treatment, widespread us-age of the APOE test will not be an effective endeavor. However, if individuals wish to use the test and are willing to subject themselves to potentially lax state discrimina-tion laws, they should be able to obtain it.

CONCLUSIONS Our research showed that understanding and recall of genet-ic information were low in a small sample. The sample size - approxi-mately 247 participants - was less than ideal. The E4/E4 group con-sisted of only 13 people, so results obtained for this group were less reliable than those from the single E4 and non-E4 groups, which were 83 and 155 people, respectively. Larger samples generally produce more dependable results. As summarized in Table 1, the demographics of the sample were different from that of the general population. This sample was of a higher socioeconomic status and more familiar with AD

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tigation into how genetic informa-tion uptake occurs and why it may be lower or higher in various pop-ulations. A closer examination of genetic uptake may better explain precisely what behavioral changes to expect from large-scale genetic testing for AD.

REFERENCES1) Zallen, Doris Teichler. 1997. Does It Run in the Family? A Consumer’s Guide to DNA Testing for Genetic Disorders. New Brunswick: Rutgers University Press2) Clayton, Ellen Wright. 2004. Ethical, legal, and social implications of genomic medicine. In Genomic Medicine, ed. Alan Guttmacher, Francis Collins, and Jeffrey Drazen, 148-157. Baltimore: Johns Hopkins University Press. 3) Zick, Cathleen, Charles Mathews, J. Scott Roberts, Robert Cook-Deegan, Robert J. Pokorski, and Robert C. Green. 2005. Genetic testing for Alzheimer’s disease and its impact on insurance purchasing behavior. Health Af-fairs 24, no. 2. Duke University Libraries, Duke University. http://www.lib.duke.edu (accessed 4 October 2006).4) Kier, F., and V. Molinari. 2000. ‘Do-it-your-self’ dementia testing: Issues regarding an Al-zheimer’s home screening test. In Research and Practice in Alzheimer’s Disease Volume 9, ed. B. Vellas and L.J. Fitten, 197-201. New York: Serdi.5) Kalb, Claudia. Peering into the future; ge-netic testing is transforming medicine – and the way families think about their health. News-week 11 Dec 2006. Duke University Libraries, Duke University. http://www.lib.duke.edu (ac-cessed 14 December 2006). 6) Holtzman, Neil, and Theresa Marteau. “Will genetics revolutionize medicine?” The New England Journal of Medicine 343 (No. 2): 141-144, 13 July 2000. 7) Kent, Alastair. 2001. Putting the genetics ge-nie back into its bottle. British Medical Journal 3222, no. 28. Duke University Librar-ies, Duke University. http://www.lib.duke.edu (accessed 10 December 2006). 8) Condit, Celeste, Alex Ferguson, Rachel Kas-sel, Chitra Thadhani, Holly Gooding, and Roxanne Parrott. 2001. An exploratory study of the impact of news headlines on genetic deter-minism. Science Communication 22, Duke Uni-versity Libraries, Duke University. http://www.lib.duke.edu (accessed 10 December 2006). 9) Bubela, Tania, and Timothy Caulfield. 2004. Do the print media “hype” genetic research? A comparison of newspaper stories and peer-re-viewed papers. Canadian Medical Association Journal 170 (9), Duke University Libraries, Duke University. http://www.lib.duke.edu (ac-cessed 11 February 2007). 10) Petersen, Alan. 2001. Biofantasies: genetics and medicine in the print news media. Social Science & Medicine 52. Duke Univer-sity Libraries, Duke University. http://www.lib.duke.edu (accessed 10 December 2006).11) Lock, M., S. Lloyd, and J. Prest. 2006. Ge-

netic susceptibility and Alzheimer’s disease: The penetrance and uptake of genetic knowl-edge. In Thinking about dementia: Culture, loss, and the anthropology of senility, ed. An-nette Leibing and Lawrence Cohen, 123-154. New Brunswick: Rutgers University Press. 12) Johnson, N, Davis, T, and N Bosanquet. 2000. The epidemic of Alzheimer’s disease: How can we manage the costs? PharmacoEco-nomics 18, no. 3. Duke University Libraries, Duke University. http://www.lib.duke.edu (ac-cessed 14 February 2007). 13) Farrer, L. Lindsey, Adrienne Cupples, Jona-than L. Haines, Bradley Hyman, Walter A. Kukull, Richard Mayeux, Richard H. Myers, Margaret A. Pericak-Vance, Neil Risch, and Cornelia M. van Duijn. 1997. Effects of age, sex, and ethnicity on the association between Apolipoprotein E genotype and Alzheimer dis-ease: A meta-analysis. Journal of the American Medical Association 278, no. 16 ( Duke Uni-versity Libraries, Duke University. http://www.lib.duke.edu (accessed 10 December 2006). 14) R1402. Percent of People 25 Years and Over Who Have Completed a Bachelor’s De-gree: 2005. U.S. Census 2005. http://factfinder.census.gov/servlet/GRTTable?_bm=y&-geo_id=01000US&-_box_head_nbr=R1402&-ds_name=ACS_2005_EST_G00_&-format=US-3015) U.S. Census Median Income 2005. U.S. Census 2005. http://www.census.gov/hhes/www/income/acscpsinccomp.html16) Sloan, Frank, V. Kerry Smith, and Donald H. Taylor, Jr. 2003. The Smoking Puzzle: Information, Risk Perception, and Choice. Cambridge: Harvard University Press.17) Lerman, Caryn, Robert Croyle, Kenneth Tercyak, and Heidi Hamann. 2002. Genetic testing: Psychological aspects and implications. Journal of Consulting and Clinical Psychology 70, no.3 Duke University Libraries, Duke Uni-versity. http://www.lib.duke.edu (accessed 31 January 2007).18) Solomon, P.R. 2000. Detecting Alzheimer’s disease: The 7 minute screen. In Research and Practice in Alzheimer’s Disease Volume 3, ed. B. Vellas and L.J. Fitten, 119-125. New York: Serdi.19) Farrer, L., M. Brin, L. Elsas, A. Goate, J. Kennedy, R. Mayeux, R. Myers, P. Reilly, and N. Risch. 1995. Statement on use of Apolipo-protein E testing for Alzheimer disease. Journal of the American Medical Association 274, no. 20 (22 November), Duke University Libraries, Duke University. http://www.lib.duke.edu (ac-cessed 10 December 2006). 20) McConnell, L.M., B.A. Koenig, H.T. Gree-ly, T.A. Raffin, and the Alzheimer Disease Working Group of the Stanford Program in Ge-nomics, Ethics, & Society. 1998. Genetic test-ing and Alzheimer disease: Has the time come? Nature 4 (7). . Duke University Libraries, Duke University. http://www.lib.duke.edu (accessed 31 January 2007).21) Sligo, F.X., and Anna Jameson. 2000. The knowledge - behavior gap in use of health information. Journal of the American Society for Information Science 51(9): 858-869. Duke University Libraries, Duke University. http://www.lib.duke.edu (accessed 11 Feb. 2007).

than the general population, so our findings likely underestimated the misunderstanding that would occur on a more widespread level. High socioeconomic status groups tend to acquire, retain, and respond to new health information better than groups of lower socioeconomic status.21 Participants were not cho-sen randomly but came forward themselves or were already part of an existing research database. The self-referral element introduced self-selection bias; individuals with substantial knowledge about AD may have participated at a higher rate, further making this a non-representative sample. An appropriate follow-up study could compare delivery of genetic counseling and its effect on genetic understanding and be-havioral change. One group could receive written test results while the others could undergo various types of genetic counseling (i.e. in person, over the phone). Then, re-call and understanding of genetic information as well as behavioral changes could be measured. Before we design more specific policy recommendations, we must first establish who owns the genetic information itself. If it is solely the property of the pa-tient, then insurance companies do not have a right to access or use this knowledge to adjust insur-ance rates. If, on the other hand, genetic discrimination laws do not exist or are lax (as is currently the case in many states), we must take potential discrimination into account. Before allowing genetic information to reach more people, we must consider that it might fall into the hands of exploiters. Our research only ad-dressed genetic misunderstand-ing on a superficial level. Never-theless, the findings seem strong enough to encourage more inves-

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INTRODUCTION Costa Rica, with a total land area of 51,100 square kilome-ters, is a country slightly smaller than the state of West Virginia and has a total population of 4.02 mil-lion.1 The indigenous population, residing on twenty-two indigenous reserves, comprises only 1.7% of this population (K. Sasa pers. comm. 12 July 2006). There are currently six indigenous tribes in Costa Rica: Boruca, Bribri, Cabé-car, Guaymi, Maleku, and Térraba. Collectively, due to their location in remote and inhospitable rural areas, the indigenous communities often lack access to health care, schools, electricity, and potable water. Socialized health care has reached the indigenous communi-ties of Costa Rica only within the past decade. In 1999, the govern-ment completed distribution of identification cards to all indig-enous people through the National Indigenous Commission.2 Conse-quently, all indigenous people were given the benefit of citizenship including seguro social (social-ized health insurance). While this helped to facilitate access to public medical facilities for all citizens,

the question remains as to how this has affected indigenous communi-ties and, in particular, their utiliza-tion of dental healthcare. Some previous studies have been conducted on the dental health of the Costa Rican indigenous pop-ulations, but extensive field studies have yet to be conducted by health specialists. Among the few studies that have been conducted, distinc-tion between deciduous (primary) and succedaneous (permanent) dentition, two considerably differ-ent anatomical entities,3 was not made clearly. Hence, the purpose of this study was to analyze the dental health conditions in three of the indigenous tribes, the Borucas, the Malekus, and the Bribris, and compare dental health conditions with two non-indigenous commu-nities in Costa Rica. This study sought to accu-rately represent the oral health of three indigenous communities: the Borucas, the Malekus, and the Bri-bris (Fig. 1). Studying the indig-enous communities was deemed particularly important in study-ing personalized aspects of dental health, because each community was influenced by unique environ-

mental factors. A complete dental inventory was conducted using an age range that encompassed all the years of primary dentition up until the age in which the full permanent dental arcade develops. The se-verities of pathologies, not just the quantity of pathologies, were also analyzed. This study also includes the results of extensive interviews with children and adults on the dental hygiene of both indigenous and non-indigenous communities. Factors which influence indigenous children’s adherence to self-care standards were appraised through a survey of access to and utilization of health care, pervasiveness of health education, attitudes towards self-care standards, and identifi-able cultural factors. The results of this study can serve to educate indigenous groups on how to im-prove dental hygiene, utilization of health care, and ultimately the overall health status of their chil-dren. The Boruca population consists of approximately 2,000 in-dividuals and is located in the prov-ince of Puntarenas in the south-eastern section of Costa Rica (L.D. Gómez pers. comm. 30 July 2006).

An Analysis of Juvenile Dentition and Dental Health in Costa Rican Indigenous Communities

Alfredo García1, Christina Guzzo2

1. Department of Biological Anthropology and Human Anatomy, Duke University.2. Department of Biology, Duke University.

ABSTRACTWe studied the personalization of dental health care in Costa Rican indigenous populations. Dental health of three Costa Rican indigenous populations and two rural, non-indigenous communities were surveyed. Fifty-six individuals, both children and adults, were interviewed regarding dental hygiene practices and the dentition of eighty-nine children from the ages of two to thirteen was examined. The average number of serious dental pathologies was distinctly higher in in-digenous communities. Forty-two percent of the dental examinations of indigenous children demonstrated anterior dental pathologies compared to twenty percent in a non-indigenous comparison group. Collectively, both access to and utiliza-tion of dental health care was worse within the indigenous communities; however, there was still great variation amongst all five sites.

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away. The Bribri of Talamanca is the largest of all Costa Rican in-digenous reservations, spanning a territory of 43,690 hectares.6 For this study, two communities with-in the Bribri reserve were visited: Kachabri and Shiroles. Preserva-tion of the Bribri culture can be seen in the maintenance of their language and in the continued use of awapa (shamans) for healing purposes. The traditional modes of production among the Bribri are subsistence agriculture, fishing, and hunting. The Bribri health services have been characterized by state medical authorities as de-ficient in many aspects. The gov-ernment has recognized the lack of attention, the absence of house visits, difficulties regarding acces-sibility, and nutrition programs that are not meeting expectations.6

In addition to the three indigenous reserves, two non-indigenous communities were studied as comparison groups: La Gamba and Cahuita. La Gamba is a sustainable farming community located in the province of Puntar-enas. It was established in 1978 as a bananal (banana plantation) and has since become an example of organic and subsistence farming practices (R. Canales pers. comm.

13 July 2006). Cahuita is an Afro-Caribbean community located in the province of Limón along the east coast of Costa Rica. With the lure of Cahuita National Park and the region’s deep historical roots, this community has become a well-known tourist destination. Another distinguishing feature of Cahuita is its diversity. There are many Black, Hindu, and Chi-nese inhabitants whose ancestors were originally brought to Puerto Limón as immigrant workers.5 Recently, there has also been an influx of Germans, Swiss, and Ca-nadians, many of which own the small-businesses in Cahuita.

METHODS Research was conducted at the indigenous reserves of the Boruca, Maleku, and Bribri, the Afro-Caribbean community of Cahuita, and the campesino com-munity of La Gamba. Commu-nity consent was obtained by Or-ganization for Tropical Studies at Duke Univeresity (OTS) prior to arriving at these locations and ver-bal informed consent was sought and obtained from each consultant prior to questioning. For juvenile subjects, consent was received from their guardian before both dental examinations and gen-eral questioning. Subjects were chosen at random. Notes were made while examining the open mouths of children (Fig. 2) and dental atrophies were recorded on standardized worksheets with as much detail as possible. The quality of dental health of each child was quantified using a sys-tem devised by the authors. One gradation point was given for each of the following dental atrophies: (1) pain and/or bleeding; (2) open mesial interstitial caries on central incisors (given only one gradation point for both incisors); (3) other

Situated at the end of the flood plain of the Río Grande de Térraba (the Diquis River), in the hills of the Coastal Range, this indigenous group has had many of its lands seized by both governmental and civilian entities throughout its his-tory.4 As a result, the present-day location and span of the Boruca territory is merely a fraction of what it once comprised. Due to construction of the Interamerican Highway, which now runs though the town of Rey Curré, transpor-tation to and from the community has become much easier. Conse-quently, access to medical services has improved, but still remains limited. The Maleku are a group of roughly 500 individuals found in the province of Alajuela in North-ern Costa Rica. The community at La Fortuna, which is the south-ernmost group of Malekus, is di-vided into the three different vil-lages: Palenque El Sol, Palenque Tonjibe, and Palenque Margarita.5 This study contains data collected at the villages of Palenque Tonjibe and Palenque Margarita. The ef-fects of modernization are espe-cially profound within the com-munity at La Fortuna because of its close proximity to San Rafael de Guatuzo, only three kilometers

Fig 1. Location of Indigenous Territories within Costa Rica

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anterior caries (each given a sepa-rate gradation point); (4) medium to very large untreated caries; (5) untreated caries on the permanent dentition; and (6) considerable plaque formation (given only one gradation point for overall appear-ance). Filled or treated cavities were not given a gradation point since these pathologies had been successfully addressed by a den-tist. However, it is still of interest to examine the magnitude of the filling as an indicator of the previ-ous pathology. Further interviews were conducted with children, parents, school teachers and directors, community elders, and health-care workers.7 Both closed and open-ended questions were used for gathering dental data, using a list of thirty-five questions as a guide. Responses were recorded using notebooks and microcas-sette recorders, with the subjects’ permission. General observations were also recorded in hand note-books and digital cameras were utilized to aid with visual observa-tions. Upon completion of each consultation, either a collection of toothbrushes, toothpastes, and dental educational materials, or cookies were given to all children who contributed to our dataset. Adults were compensated for their time with dental health pamphlets or small gifts of food. RESULTS A total of 50 boys and 39 girls were examined (Fig. 3) with the majority of participants being between the ages of 7 and 12. The average number of serious dental pathologies ranged from 1.5 to 3 per mouth: 1.5 in La Gamba, 2 in Boruca, 3 in Maleku, and 3 in Bribri (Fig. 4). Due to a lack of sample size, Cahuita was omit-ted from the dental examination

Fig 2. Dental examination

Fig 3. Distribution of Sample Size

Fig 4. Average Number of Serious Dental Pathologies

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taking responsibility for teaching them how to brush their own teeth when capable. Most children also receive some form of dental health education at school. The diets among all of the consultants were very similar, consisting mainly of rice, beans, fruits, vegetables, and meat. The most common foods that children associated with being harmful to their teeth were candy, cookies, and chewing gum. The pervasiveness of these saccharines in the diet varied among the com-munities but overall consumption has increased in recent years. Re-gardless of these similarities, the overall dental health of children differed greatly among the five communities surveyed.

The Boruca The Boruca community does not possess a permanent den-tist. It was reported that a dentist visits the schools once every year; however, this service is neither consistent nor guaranteed. The schools (pre-kindergarten to sixth grade) have one week each year dedicated to health education. Adults must depend on a dentist that visits the community one day each year, but because this amount of time is insufficient to allow for examination of all community

members, only those who arrive the earliest are seen. Individu-als requiring treatment must then pay to see a private dentist located in Buenos Aires. A private den-tal visit costs between 4,000 and 5,000 colones (approx. 8 to 10 U.S. dollars). Considering nearly all of the adults in the Boruca com-munity are artists, these services are too expensive and therefore not often utilized. In the case of an emergency, the nearest hospital is located in Buenos Aires, a three-hour bus ride from Boruca.

The Maleku The Maleku community, like the Boruca, does not have a permanent dentist. However, there is a clinic with one perma-nent dentist located in San Rafael de Guatuzo, only three kilometers away. This dentist is covered by seguro social but an appointment is required and only one service can be provided per visit. Fifteen to eighteen days usually elapse be-tween requesting an appointment and being seen by the dentist. The majority of children rely only on a dentist who comes to the schools once per year at the request of the teachers. A dentist also comes to the government sponsored EBAIS (Equipos Básicos de Atención In-

charts; dental hygiene information from interviews, however, was still collected. The averages from La Gamba are excluded in Figure 5 to allow for comparison among only the indigenous communities. Pathologies of the anterior teeth (comprised of the incisors and canines) were noted in 34 out of a total of 89 individuals (38%). The percentage increases when data from La Gamba is excluded, leaving only the data obtained from indigenous communities. Out of a total of 74 indigenous par-ticipants, 31 displayed anterior pa-thologies (42%). Altogether, 29 of 66 individuals interviewed (44%) reported brushing their teeth three times per day. Thorough interviews were carried out with fourteen children at each community, seven of each gender. The guardian of each child was also interviewed. In ad-dition, interviews were conducted with directors of the secondary schools, health care workers, el-ders, and parents of children too young to be interviewed directly. Although distinguishable charac-teristics were observed in each of the five communities, there were also many similarities. Nearly all of the children reported brushing their teeth at least two times per day. Both adults and children use only a toothbrush and toothpaste to clean their teeth. Colgate is the toothpaste of choice through-out all five communities. Almost all teeth develop cavities and are pulled by the dentist before given the opportunity to fall out on their own. Only three adults reported knowledge of natural remedies for oral conditions. However, these are no longer utilized and none of the children were aware of such treatments. All parents reported brushing their children’s teeth from birth through infancy and

Fig 5. Average Number of Serious Dental Pathologies – Indigenous

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tegral en Salud) clinic located in Palenque Margarita once every six months to examine the adults. It was reported that this dentist spends thirty minutes with each patient cleaning and pulling teeth when necessary. This dentist is only able to examine a small per-centage of the adult population during each visit, which leaves many adults going several years without seeing a dentist. Private dentists are seldom utilized consid-ering the consultation alone costs 15,000 colones (approx. 30 U.S. dollars). The nearest hospital is located in San Carlos, 78 kilome-ters from the Maleku reserve. All five of the adults interviewed em-phasized the characteristic strength and resistance of the Maleku peo-ple’s teeth. Dental hygiene has significantly improved within the past thirty years as toothbrushes and toothpaste were introduced to the Maleku. They also attributed this improvement to an increase in education and the maintenance of a natural diet consisting of fruits, vegetables, fish, animals from the forest, and little sugar. In addition, tobacco use is uncommon. The Bribri The health care system within the Bribri Talamanca Re-serve has improved significantly in the past few years but these improvements are not apparent in the dental health. Services are now available twenty-four hours a day at the clinic in Suretka from a team of permanent doctors. This clinic also staffs a permanent den-tist. Groups of 25 to 30 doctors and dentists visit periodically from larger cities in Costa Rica and from the United States to set up free clinics in local churches. Se-rious dental problems were preva-lent among children and there was a lack of basic knowledge about

proper dental hygiene. Consultants reported a large discrepancy in the services provided by the schools. While one school has electricity and is visited by a dentist once a year, another school does not have electricity and receives absolutely no help from the government in promoting the dental health of its students. Many of these children have never been to a dentist and do not realize the importance of tak-ing good care of their teeth.

Non-indigenous Communities In contrast to the indige-nous communities, not all individ-uals in Cahuita and La Gamba have seguro social. There were signifi-cant differences in the utilization of dental healthcare between those who receive seguro social and those who do not, with the major-ity of those not receiving seguro social having never seen a dentist. In addition, while dentists do visit the schools yearly to examine the children, they do not come to set up clinics for the adults. The near-est dentist to La Gamba is located 12 kilometers south in the town of Golfito (L.D. Gómez pers. comm. 7 August 2006). The nearest den-tist to Cahuita is located inside of the hospital in Home Creek, which is a thirty-minute bus ride. This dentist only sees patients on Mon-days and Tuesdays from 9:00 am to 4:00 pm. Patients must arrive very early and wait for several hours in order to be seen. Unlike the other communities visited, several con-sultants from Cahuita reported vis-iting private dentists in Limón and using dental floss. Construction on a new dental health care facil-ity has recently begun in Cahuita.

DISCUSSION Consultations with indi-viduals residing in Cahuita and La Gamba were used as comparison

groups to assist our evaluation of the dental healthcare situation in indigenous communities. Collec-tively, adherence to oral self-care standards was higher among con-sultants in Cahuita and La Gamba than in the three indigenous com-munities. This was indicated by an increased frequency and du-ration of brushing, avoidance of foods that are high in sugar, fewer teeth pulled and more teeth falling out naturally, and more frequent visits to the dentist. The better oral hygiene practices in Cahuita could be attributed to many fac-tors, such as better school systems, higher income, easily accessible transportation, and the influence of tourists. The qualitative data from dental examinations further substantiate this large inequity ex-isting between the dental health of indigenous and non-indigenous children of Costa Rica. The most significant find-ing was the frequency of anterior pathologies observed. Caries le-sions are typically found in the posterior dentition where the deep occlusal crenulations and difficult-to-brush areas are conducive to the formation of cavities. It is uncom-mon to find caries lesions in the anterior dentition where the tooth morphology is not conducive to residual food and sugar buildups. However, we observed anterior caries in 38% of the total children studied, and more strikingly, in 42% of the children in indigenous communities. This becomes even more interesting when one com-pares this figure to the 44% of chil-dren (all indigenous) who stated that they brushed their teeth three times per day. Yet anterior pathol-ogies are preventable with simple brushing. They should only arise when food particles are allowed to remain in the interstitial areas for considerable amounts of time.

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the cause of poor dental hygiene to a lack of information, education, resources, and help from the gov-ernment. It should be noted, how-ever, that the extension of gov-ernmental services to indigenous communities has only occurred within the past decade. Therefore, it is quite possible that the services provided are still being fine-tuned. The best solution would be for the government to pinpoint existing weaknesses in dental hygiene and develop a straightforward regi-men for all citizens of Costa Rica to follow that would combat these issues. Consistent efforts should also be made to enforce this regi-men. Members of the indigenous communities reported that the gov-ernment currently provides mini-mal preventive education, and that this instruction is not professional and not delivered with authority. Furthermore, dental education has only been introduced to the indig-enous communities within the last few decades, and many parents remain unaware of the importance of maintaining healthy oral hy-giene. As a result, children also fail to recognize the consequences. Many consultants mentioned that education would significantly im-prove dental health. Colgate has sponsored a global dental aware-ness program entitled Sonrisas Brillantes, Futuros Brillantes for the past 15 years. Pamphlets for parents and worksheets for chil-dren depict the proper dental care techniques and practices. But, we were the first to introduce these educational materials to the indig-enous families. Future studies should look at the dental health of adults to see whether there is a correlation across generations. To improve accuracy, a larger sample size must be examined at each community and more detailed observations

should be made. It would also be of benefit to visit and interview the dentists treating the members of each community. Interviews with residents of La Gamba con-cerning oral health practices and dental examinations with children of Cahuita would contribute to a more thorough study. Future stud-ies should also look at the impact of the distribution of toothbrushes on the dental health of children. The dental health of these com-munities should be monitored for detection of any trends. Producers of dental hygiene products should be encouraged to launch pro bono campaigns in indigenous commu-nities to encourage personalized and preventive approaches in den-tal health.

REFERENCES1) CIA. “The World Factbook.” Last updated: 20 July 2006. <https://www.cia.gov/cia/ publi-cations/factbook/geos/cs.html> 5 Aug 2006.2) U.S. Department of State. 2001. Country Reports on Human Rights Practices. Released by the Bureau of Democracy, Human Rights, and Labor. <http://www.state.gov/g/drl/rls/hrrpt/ 2000/what/746.htm> 5 Aug 2006.3) C.J. “The Deciduous Dentition.” 1998. <http://www.forensicdentistryonline.org/ tooth_morphology/deciduous_dentition.htm> 5 Aug 2006.4) Stone, Doris Z. 1949. The Boruca of Costa Rica. Papers of the Peabody Museum of Amer-ican Archaeology and Ethnology, Harvard Uni-versity, Vol. XXVI (2): 1-42.5) Organization for Tropical Studies (OTS)/Duke University. 2006. Introduction to Field Ethnobiology. Undergraduate Study Abroad Program, Participant Observation.6) Ministerio de Agricultura y Ganaderia: Pro-grama de Desarrollo Rural. 2000. Plan Nacio-nal de Desarrollo de Las Comunidades Indige-nas.7) Martin, G.J. 2004. Ethnobotany: A Methods Manual. Earthscan; Sterling, VA.8) Caja Costarricense de Seguro Social, Area de Salud Coto Brus. 2004. Analisis de Situación de Salud. San José, Costa Rica. Centro de De-sarrollo Estratégico de información en Salud y Seguridad Social.9) Castro, M. 2000. Proceso participative para el desarrollo de la comunidad indígena Maleku. Programa de Desarrollo Rural, Región Huetar Norte. Comisión Técnica Regional Guatuso.10) Wahl, Shaina. 2005. Beyond the Smiles: A look at the teeth of Indigenous children in Costa Rica. Introduction to Field Ethnobiology Course Book, Organization for Tropical Studies Undergraduate Studies Abroad Program.

At the same time, the se-verity of other pathologies detect-ed is of considerable importance. Many of the cavities had extended considerably deep within the tooth crown and were completely un-treated. In some cases, the cavity succeeded in devouring the tooth crown entirely to the gum line. These results are noteworthy con-sidering the majority of patholo-gies observed are preventable with simple dental care and attention. With early identification, caries can be treated quickly and easily, thus preventing the catastrophic damage we observed. Through our comparison of indigenous and non-indigenous communities, it is clear that the governmental resources regarding dental health are not sufficiently reaching the indigenous people. The fact that these communities are isolated significantly impacts their access to dental care. Dif-ficult terrain separates the indig-enous communities from urban ar-eas, where better services are often available. And although services are provided within or in close proximity to each of the indig-enous reserves, these services are lacking in many areas. First, the clinics are understaffed and there is often only one public dentist to permanently serve an entire indig-enous group. Second, the visiting dentists only come to the commu-nity sporadically and are not able to visit a significant proportion of the population in the duration of their stay. The lack of adequate dentists is mainly due to unwill-ingness of non-indigenous dentists to permanently reside in the indig-enous communities. Additionally, very few, if any, indigenous peo-ple attend medical or dental school and therefore cannot bring their expertise back to the community. Consultants also attributed

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Debating the Merits of Genomic Testingin Prospective Health Care

By Charles Wang

Genomic testing is a crucial element of prospective health care because it can more accurately predict new strains and trends of diseases, determine at risk populations, and realize the most appropriate prevention methods. How-ever, the ethical debates and financial burdens involved in such a scientific breakthrough are also the primary obstacles to one of the first fundamental steps, widespread policy changes, in this newest health care revolution.

Pros ConsIncreased Understanding of the genetics of different diseases.

Viruses and bacteria mutate, and new strains are formed with each generation.

Who becomes more susceptible to each new form?How do current medication and other ailments interact with them?

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Predict who is more at risk for a certain condition.Static data: family history, genotype, past medical history, raceDynamic data: aging, lifestyle risks, environmental effectsPredict who is/will be victims of common, preventable chronic illnesses?- Diabetes- Obesity- Cardiovascular diseases- Musculoskeletal diseases- Cancer

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Genetic discriminationInevitable social stigma associated with at risk populations.Inaccurate generalizations extended to entire ethnic groups and genders.

Invasion of privacyWho has access to sensitive information?Will FDA, hospitals, doctors, patients, insurance companies be granted access?

Paranoia from ignorance and misinformationHow to quantify the risk associated with certain populations or genotypes?How to decide how much risk is sufficient to warrant a preventive surgical procedure?

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Determine the most effective type of prevention or treatment for individuals.

Personalized health advising - One-year, five-year health plans that include diet, exercise, and other habits.

Personalized medication - Treat unique strains of the same disease. - More effective for certain populations.

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Who is responsible for managing and financing these projects?

Will this endeavor be international or domestic? Governmental or private?

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Who will pay for a long term plan to prevent a condition that may not develop?

- Will insurance companies be willing to support at-risk clients? - Will federal governments or international organizations make prevention a priority in the face of more urgent situations?

Will different socioeconomic classes receive the same treatments and priorities?

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About the Duke Prospective Health Care Club:

PHCC is a student organization focused upon studying, promoting, and establishing the foundations for a Prospective Health Care system. PHCC aims to foster discussion of this mode of medicine both in the Duke University community and more generally among undergraduate institutions nationally and abroad. Symposiums, publications, and curricular methods will be utilized to further this goal. Research-service projects will be implemented in the surrounding Durham community to improve overall health as well as to inform the public about the changing face of health care. All of the above shall always be conducted in a manner that is ethical, empathic, honest, and of highest quality.

About the Editorial Board:

Name: Myung KoPosition: VP, Publications Committee Chief Editor, Journal of PHCYear: 2007Area of Study: Biology

Name: Angela MunasquePosition: President, PHCC Senior Editor, Journal of PHC Year: 2007Area of Study: English

Name: Charles WangPosition: Senior Editor, Journal of PHC Year: 2007Area of Study: Biomedical and Electrical Engineering

Name: Josephine LiPosition: Editor, Journal of PHCYear: 2010Area of Study: Chemistry

Name: Max MasnickPosition: Editor, Journal of PHCYear: 2009Area of Study: Public Policy, Computational Biology and Bioinformatics

Name: Varun GokarnPosition: VP, Curriculum Committee Editor, Journal of PHC Year: 2009Area of Study: Biomedical Engineering

Name: Crystan DowdsPosition: Editor, Journal of PHCYear: 2010Area of Study: Chemistry

The Journal of Prospective Health Care would like to thank our sponsors who have helped bring about our first issue.

Duke University Prospective Health Care Clubc/o Publications CommitteeDurham, NC 27708

www.duke.edu/web/phcc/

journal of prospective health care volume 1

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