Genetics & Ethics

Genetic testing

The physical risks associated with most genetic tests are very small, particularly for those tests that require only a blood sample or buccal smear (a procedure that samples cells from the inside surface of the cheek). The procedures used for prenatal testing carry a small but real risk of losing the pregnancy (miscarriage) because they require a sample of amniotic fluid or tissue from around the fetus.

Many of the risks associated with genetic testing involve the emotional, social, or financial consequences of the test results. People may feel angry, depressed, anxious, or guilty about their results. In some cases, genetic testing creates tension within a family because the results can reveal information about other family members in addition to the person who is tested. The possibility of genetic discrimination in employment or insurance is also a concern.

Genetic testing can provide only limited information about an inherited condition. The test often can't determine if a person will show symptoms of a disorder, how severe the symptoms will be, or whether the disorder will progress over time. Another major limitation is the lack of treatment strategies for many genetic disorders once they are diagnosed.

A genetics professional can explain in detail the benefits, risks, and limitations of a particular test. It is important that any person who is considering genetic testing understand and weigh these factors before making a decision.

Many people are also concerned about the privacy implications of genetic testing. In the United States, federal law requires that this kind of medical information is kept confidential.

Genetic Discrimination

Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. People who undergo genetic testing may be at risk for genetic discrimination.

The results of a genetic test are normally included in a person's medical records. When a person applies for life, disability, or health insurance, in some countries the insurance company may ask to look at these records before making a decision about coverage. An employer may also have the right to look at an employee's medical records. As a result, genetic test results could affect a person's insurance coverage or employment. People making decisions about genetic testing should be aware that when test results are placed in their medical records, the results might not be kept private.

Fear of discrimination is a concern among people considering genetic testing. Several countries have laws that help protect people against genetic discrimination; however, genetic testing is a fast-growing field and these laws don't cover every situation

Where Does the Church Stand?

It is clear that many religious ethicists oppose genetic discrimination. In 1989, the Church and Society commission of the World Council of Churches released a study document, “Biotechnology: Its Challenges to the Churches and the World,” which draws attention to “unfair discrimination...in work,

health care, insurance and education.” Similarly, in the proposal approved by its 1992 General Conference, the United Methodist Church Genetic Task Force listed prominently among possible HGP repercussions, “discrimination: the suffering and/or hardship that may result for persons with late-onset disease like Huntington’s or Alzheimer’s disease, or with a genetic predisposition to diseases like high cholesterol levels or aarteriosclerosis.” And, in 1989, the Seventeenth General Synod of the United Church of Christ meeting in Fort Worth, Texas, approved a Pronouncement which included a rejection of “screening as a basis for determining civil, economic, or reproductive rights.” A resolution passed at the 70th General Convention of the Episcopal Church in July of 1991 states forcefully: “The use of results of genetic screening of adults, newborns and the unborn for the purpose of discrimination in employment and insurance is unacceptable.”

This clear stand against genetic discrimination provides a solid foundation from which to build an ethical proposal, but it stops here. There are hints that church ethicists will side with those who advocate privacy; and there are hints that they favor some sort of national program which guarantees health care to everyone. What we do not yet see among religious leaders is any overall vision regarding the potential value (or nonvalue) of widespread use of genome information for health care delivery.

Public Concern Against Discrimination

In 1993, the Ethical, Legal and Social Implications (ELSI) Working Group of the Human Genome Project issued a report titled "Genetic Information and Health Insurance". The report recommended that people be eligible for health insurance no matter what is known about their past, present or future health status. Two years later, the ELSI Working Group and the National Action Plan on Breast Cancer (NAPBC) jointly developed guidelines to assist federal and state agencies in preventing genetic discrimination in health insurance. Further, the ELSI Working Group and NAPBC recommended that health insurers be prohibited from using genetic information or an individual's request for genetic services to deny or limit health insurance coverage, establish differential rates or have access to an individual's genetic information without that individual's written authorization. Written authorization, the groups said, should be required for each separate disclosure and should specify the recipient of the disclosed information.

Next, the National Human Genome Research Institute (NHGRI) and the United States Department of Energy, acting through the ELSI Working Group, cosponsored a series of workshops in the mid-1990s on genetic discrimination in health insurance and the workplace. The findings and recommendations of the workshop participants were published in Science: (Genetic Information and the Workplace: Legislative Approaches and Policy Challenges [sciencemag.org]) magazine, the monthly journal of the American Association for the Advancement of Science.

Laws Against Discrimination

Those recommendations, and earlier ones issued by the ELSI Working Group and NAPBC led, in part, to new legislation and policies at both the federal and state levels. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 provided the first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. It limited exclusions from group plans for preexisting conditions to 12 months and prohibited such exclusions for people who had been covered previously for that condition for 12 months or more. And the law specifically stated that genetic information in the absence of a current diagnosis of illness did not constitute a preexisting condition.

The next step in addressing the issue of genetic discrimination was taken by President Bill Clinton. The President had earlier supported proposed legislation that would have banned all health plans - group or individual - from denying coverage or raising premiums on the basis of genetic information. When the legislation failed to pass Congress, President Clinton issued an executive order ( Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information) in February 2000 prohibiting agencies of the federal government from obtaining genetic information about their employees or job applicants and from using genetic information in hiring and promotion decisions.

There continues to be a high degree of interest in these topics in state legislatures. More than one hundred bills were introduced in state legislatures in 2000 alone. Some would inaugurate protection from genetic discrimination while others would modify or clarify existing legislation.