Lecture 11 Lecture 11 Eugenics and Genetics:Eugenics and Genetics:

AnxietiesAnxieties

BMS2250 Medical Ethics

Semester 1, 2006-07

P. C. Lo

(A) Recapitulation (A) Recapitulation

Moral excitements over genetic science Moral excitements over genetic science and technologyand technology

Joseph Fletcher, Gregory PenceJoseph Fletcher, Gregory Pence

““Today we are learning the Today we are learning the language in which God language in which God

created life….created life….With this profound new With this profound new

knowledge, human kind is on the knowledge, human kind is on the verge of gaining immense new verge of gaining immense new

powerpower to heal….” to heal….”President Bill ClintonPresident Bill Clinton

The New York Times, June 27, 2000, D8.

(B) General Anxieties(B) General Anxieties

LiteratureLiterature

Movies Movies

Mary W. Shelley, Frankenstein, or the Modern Prometheus, 1818

                                                                                                                        

1932

Central London Hatchery Central London Hatchery and Conditioning Centreand Conditioning Centre

2540 A.D.2540 A.D.

Human beings no longer produce living Human beings no longer produce living offspring. Instead, surgically removed offspring. Instead, surgically removed ovaries produce ova that are fertilized in ovaries produce ova that are fertilized in artificial receptacles and incubated in artificial receptacles and incubated in specially designed bottles specially designed bottles

ReproductiveReproductive conditioningconditioning

Fetuses are conditioned differentlyFetuses are conditioned differently

Upper caste -- Alphas and Betas Upper caste -- Alphas and Betas

LLower casteower caste -- Gammas, Deltas, and -- Gammas, Deltas, and Epsilons Epsilons

1940

The Sorcerer's Apprentice – we are incapable to control Nature’s awesome power

““Rape of nature”Rape of nature”

““Control is an illusion”Control is an illusion”

““We should have some We should have some respect for that power”respect for that power”

Department of Precrime Department of Precrime 2054 A.D.2054 A.D.

Can we arrest and convict Can we arrest and convict someone for the future murder someone for the future murder of a man whom he has not even of a man whom he has not even met?met?

Is it possible for the Pre-Cogs to Is it possible for the Pre-Cogs to be wrong?be wrong?

How far can pre-emptive strike How far can pre-emptive strike go?go?

What happens if What happens if some of us can some of us can foresee the future?foresee the future?

Does fore-Does fore-knowledge takes knowledge takes away human free away human free will and will and responsibility?responsibility?

Foreknowledge and Free Choice?Foreknowledge and Free Choice?

(C) To Have “Better Children”(C) To Have “Better Children”

ThreeThree Eugenic Strategies Eugenic Strategies in the Genetic Agein the Genetic Age

1.1. Eliminating the bad (“screening out”)Eliminating the bad (“screening out”)Prenatal diagnosisPrenatal diagnosis

2. Selecting the good (“choosing in”)2. Selecting the good (“choosing in”)Preimplantation genetic diagnosis (PDG)Preimplantation genetic diagnosis (PDG)

3. Redesigning for the better (“fixing up”)3. Redesigning for the better (“fixing up”)Genetic engineeringGenetic engineering

From: Beyond Therapy (2003), p.33

1. “Screening Out”1. “Screening Out”

Ultrasonogram, Amniocentesis, Chorionic Ultrasonogram, Amniocentesis, Chorionic villi samplingvilli sampling

Tay-Sachs disease, anencephaly Tay-Sachs disease, anencephaly Downs SyndromeDowns SyndromeMultiple congenital anomaliesMultiple congenital anomalies

ABORTION !!ABORTION !!

Clinical Genetic ServiceClinical Genetic Service Department of Health, HKDepartment of Health, HK

Genetic Counselling Unit – offers genetic Genetic Counselling Unit – offers genetic counseling for familiescounseling for families

Genetic Screening Unit -- operates two Genetic Screening Unit -- operates two screening programmes for newborns, screening programmes for newborns, namely, glucose-6-phosphate namely, glucose-6-phosphate dehydrogenase (G6PD) deficiency and dehydrogenase (G6PD) deficiency and congenital hypothyroidism.congenital hypothyroidism.

2. “Fixing Up”2. “Fixing Up”

Genetic engineering of desired traitsGenetic engineering of desired traits““Designer babies”; genetic “upgrade”Designer babies”; genetic “upgrade”Once the specific variants of genes are Once the specific variants of genes are identified, the requisite genes could be identified, the requisite genes could be isolated, replicated or synthesized, and isolated, replicated or synthesized, and then inserted into the early embryo (or then inserted into the early embryo (or perhaps into the egg or sperm) in ways perhaps into the egg or sperm) in ways that would eventually contribute to the that would eventually contribute to the desired phenotypic traits.desired phenotypic traits.

PracticalPractical difficultiesdifficulties

To produce the desired result and only the To produce the desired result and only the desired resultdesired result

To avoid abnormalities, either by activating To avoid abnormalities, either by activating harmful genes or by inactivating useful harmful genes or by inactivating useful onesones

Artificial chromosomes?Artificial chromosomes?

EthicalEthical WorriesWorries

Do parents have the right to pre-select Do parents have the right to pre-select traits for their descendents?traits for their descendents?

To be discussed laterTo be discussed later

3. “Choosing In” -- PGD3. “Choosing In” -- PGDTo detect genetic or chromosomal abnormalities To detect genetic or chromosomal abnormalities

in vitroin vitro

Non-therapeuticNon-therapeutic applicationsapplications

To pre-select the gender of a childTo pre-select the gender of a child

To produce a child who could serve as a To produce a child who could serve as a compatible bone-marrow or umbilical-cord-compatible bone-marrow or umbilical-cord-blood donor for a desperately ill siblingblood donor for a desperately ill sibling

PracticalPractical difficultiesdifficulties,, eugenics-eugenics-wisewise

Possible harm caused by removing Possible harm caused by removing blastomeres for testing?blastomeres for testing?

Many of the desirable human phenotypic Many of the desirable human phenotypic traits are very likely polygenic traits are very likely polygenic likelihood likelihood of finding all the “desired” genetic variants of finding all the “desired” genetic variants in a single embryo is very smallin a single embryo is very small

Interplay of nature and nurtureInterplay of nature and nurture

Inconvenient and expensiveInconvenient and expensive

WatchWatch videovideo

Superhuman 6 “The Baby Builders” (BBC, Superhuman 6 “The Baby Builders” (BBC, 2000)2000)

People already using PGD to screen for People already using PGD to screen for disease markers might seek information disease markers might seek information also about other traitsalso about other traits

Once screening becomes automated, its Once screening becomes automated, its cost comes down, or if society decides to cost comes down, or if society decides to reimburse for PGD, the use of this reimburse for PGD, the use of this approach toward “better children” might approach toward “better children” might well become the practice of at least a well become the practice of at least a significant minority.significant minority.

From: Beyond Therapy (2003), p.44.

Ethical WorriesEthical Worries

To be prevented?To be prevented?

To be tested and prevented as To be tested and prevented as well?well?

Asthma, allergies, diabetes, heart disease?Asthma, allergies, diabetes, heart disease?Deafness, Shortness in height, learning Deafness, Shortness in height, learning disabilities?disabilities?Gender?Gender?““Gay Gene”?Gay Gene”?

Should we allow couples to do these?

IssuesIssues

What is normal and what is a What is normal and what is a disability or disorder, and who disability or disorder, and who decides? decides?

Are disabilities diseases? Do disabled Are disabilities diseases? Do disabled people need to be prevented from people need to be prevented from birth? birth?

(D) The Big Debate(D) The Big Debate

Do parents have the right to pre-select traits Do parents have the right to pre-select traits for their descendents?for their descendents?

Yes, they do haveYes, they do have

the right to have a healthy childthe right to have a healthy child

the right to a perfect childthe right to a perfect child

the right to have a child that fits the familythe right to have a child that fits the family

the right to pre-select traits for our the right to pre-select traits for our descendentsdescendents

““From chance to choice”!!From chance to choice”!!

FurthermoreFurthermore

Birth control (quality) – to give the best to Birth control (quality) – to give the best to our childrenour children

To counteract Nature, which is indifferent, To counteract Nature, which is indifferent, cruel, tyrannical, oppressive, hostile, cruel, tyrannical, oppressive, hostile, reckless, relentlessreckless, relentless

No, they do not have that No, they do not have that rightright

Human beings should not play GodHuman beings should not play God

Human beings should not fool (tamper Human beings should not fool (tamper with) Mother Naturewith) Mother Nature

““ Perfect” in what sense?Perfect” in what sense? Absence of severe disease or deformityAbsence of severe disease or deformity

Absence of flaws or imperfections Absence of flaws or imperfections presence of desired positive traits !presence of desired positive traits !

Value judgement!Value judgement!

Perfect with the presence of a specific “flaw,” Perfect with the presence of a specific “flaw,” e.g., deafness?e.g., deafness?

(“A matter of culture, not a matter of (“A matter of culture, not a matter of medicine!”)medicine!”)

““ Perfect” Perfect” (cont’d)(cont’d)

A specific gender?A specific gender?

The demand for “perfection” will increase The demand for “perfection” will increase in the case of the one-child familyin the case of the one-child family

Danger of sliding down the slippery slope?Danger of sliding down the slippery slope?

Medicine as a servant of a particular Medicine as a servant of a particular culture and an agent of social culture and an agent of social discrimination?discrimination?

Deafness, obesity Deafness, obesity anorexiaanorexia

Medical attention? Medical attention? No, it is cultural.No, it is cultural.

To have a better To have a better mood, to run mood, to run faster, to look faster, to look betterbetter

Just cultural? No, Just cultural? No, it is the business it is the business of medicine.of medicine.

2006

Disease-freeDisease-free inheritance?inheritance?

““All of us carry genetic variants that All of us carry genetic variants that predispose to illness; perhaps a few dozen predispose to illness; perhaps a few dozen for each of us. It is highly unlikely that all for each of us. It is highly unlikely that all of these can ever be screened out.”of these can ever be screened out.”

The President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003), p.53.

RightRight toto choose?choose?

Whose rights are we talking about?Whose rights are we talking about?

Who has the freedom to choose?Who has the freedom to choose?

For whose sake, then, are we doing For whose sake, then, are we doing genetic eugenics?genetic eugenics?

To satisfy parents’ own interests more To satisfy parents’ own interests more than that of the descendents?than that of the descendents?

Right vs. ObligationRight vs. Obligation

Parents’ reproductive Parents’ reproductive freedomfreedom

Freedom to have a Freedom to have a desireddesired or or wantedwanted childchild

Freedom to control Freedom to control my hereditymy heredity

Parents reproductive Parents reproductive obligationobligation

Obligation to screen out Obligation to screen out only the worst genetic only the worst genetic defectsdefects

Obligation to respect my Obligation to respect my child as an independent child as an independent individual, not under my individual, not under my ownershipownership

(E) Eugenics(E) Eugenics && DiscriminationDiscrimination

Discrimination in early 20Discrimination in early 20thth century: century: compulsory sterilization, euthanasiacompulsory sterilization, euthanasia

The Nazi programme: some people (the The Nazi programme: some people (the “unfit”) are better off dead than alive; their “unfit”) are better off dead than alive; their life is not worth livinglife is not worth living

AlarmsAlarms

Many disabled people feel threatened by Many disabled people feel threatened by genetic advances and are hurt by cheerful genetic advances and are hurt by cheerful talk about engineering a world without talk about engineering a world without people like them. “That’s very difficult for people like them. “That’s very difficult for disabled people. To hear people discuss disabled people. To hear people discuss a world in which you don’t exist can be a world in which you don’t exist can be very hurtful.” very hurtful.” (Tom Shakespeare, July 4, 2003)(Tom Shakespeare, July 4, 2003)

Lee M. SilverLee M. Silver2 unequal classes of people in the 2 unequal classes of people in the futurefutureThe The NaturalsNaturals vs. the vs. the GenRichGenRich, i.e., , i.e., Gene-enriched Gene-enriched (cf. the 2 casts in the (cf. the 2 casts in the Brave New WorldBrave New World))

The widening gap between “rich” The widening gap between “rich” and “poor”, genetically as well as and “poor”, genetically as well as economicallyeconomically24 pairs of chromosomes; species 24 pairs of chromosomes; species separation!separation!

Silver, Remaking Eden (1997), pp.4-7, 246.

This science fiction drama is set in a future when This science fiction drama is set in a future when one's life is determined by genetic engineering one's life is determined by genetic engineering rather than education or experience. The rather than education or experience. The wealthy can choose the genetic makeup of their wealthy can choose the genetic makeup of their descendants. People are designed to fit into descendants. People are designed to fit into whatever role is decided before birth. But what whatever role is decided before birth. But what happens when someone desires another way happens when someone desires another way of life? Citizens in this impersonal future-world of life? Citizens in this impersonal future-world are fashioned as perfect specimens, so those in are fashioned as perfect specimens, so those in the natural-born minority are viewed as inferior the natural-born minority are viewed as inferior to the pre-planned perfect specimens (aka to the pre-planned perfect specimens (aka "Valids") who dominate. "Valids") who dominate.

One of the natural-borns (aka "In-Valids"), Vincent One of the natural-borns (aka "In-Valids"), Vincent Freeman (Freeman (Ethan HawkeEthan Hawke), has several defects (poor ), has several defects (poor vision, emotional problems, and short 30-year life vision, emotional problems, and short 30-year life expectancy), but he also develops a different outlook expectancy), but he also develops a different outlook on his pre-ordained fate. He yearns to break free on his pre-ordained fate. He yearns to break free from society's constraints, and he dreams of a from society's constraints, and he dreams of a journey into space as a Gattaca Corp. navigator. To journey into space as a Gattaca Corp. navigator. To accomplish his goal, he enlists the aid of DNA broker accomplish his goal, he enlists the aid of DNA broker German (German (Tony Tony ShalhoubShalhoub) and makes contact with ) and makes contact with Jerome Morrow (Jerome Morrow (Jude LawJude Law), who was paralyzed in ), who was paralyzed in an accident and is willing to sell his superior genetic an accident and is willing to sell his superior genetic materials. Vincent assumes Jerome's identity and is materials. Vincent assumes Jerome's identity and is scheduled for a flying mission scheduled for a flying mission

However, a week before his flight, a Gattaca However, a week before his flight, a Gattaca mission director is murdered, and all mission director is murdered, and all members of the program are the suspects. members of the program are the suspects. Meanwhile, he develops a romantic Meanwhile, he develops a romantic interest in a beautiful Valid, Irene (interest in a beautiful Valid, Irene (UmaUma Thurman Thurman), prevented from going into ), prevented from going into space because of her heart defect. space because of her heart defect. Tracked by a relentless investigator who is Tracked by a relentless investigator who is methodically jigsawing all the pieces methodically jigsawing all the pieces together, Jerome finds his aspirations together, Jerome finds his aspirations dissolving into stardust. dissolving into stardust.

Two kinds of peopleTwo kinds of peopleA “made man”A “made man” A “faith birth”A “faith birth”

A “A “vitrovitro”” An “An “uteroutero””

A “Valid”A “Valid” An “In-valid”An “In-valid”

A “de-gene-erate”A “de-gene-erate”

“Genoism” – Discrimination on the basis of “genetic quotient”; social prejudice and stigmatization

Vincent: a product of “reproductive roulette”Vincent: a product of “reproductive roulette”

Anton: a product of parental choiceAnton: a product of parental choice

““Leave a few things to Chance.” “No, you Leave a few things to Chance.” “No, you should give the child the best possible start should give the child the best possible start in life. He will be the best of you”in life. He will be the best of you”

Father likes Anton better, whom he deems is Father likes Anton better, whom he deems is worthy of his name (Antonio)worthy of his name (Antonio)

Vincent’s dream is to become an Vincent’s dream is to become an astronaut, but he is ridiculed by his fatherastronaut, but he is ridiculed by his fatherWidespread discrimination in society (e.g., Widespread discrimination in society (e.g., employment)employment)The job interview is a urine testThe job interview is a urine testVincent can only clean toilets, and is a Vincent can only clean toilets, and is a new underclassnew underclassDiscrimination down to a science! Discrimination down to a science! However, a swimming contest with his However, a swimming contest with his brother gives Vincent self-confidence, and brother gives Vincent self-confidence, and he decides to pursue his dreamhe decides to pursue his dream

WatchWatch moviemovie

Chapter 3Chapter 3

8:20 – 19:568:20 – 19:56

Coda of additional featureCoda of additional feature

If parents are to choose only a genetically If parents are to choose only a genetically healthy child, the following people would healthy child, the following people would not have been born:not have been born:

Abraham LincolnAbraham Lincoln Marfan SyndromeMarfan Syndrome

Emily DickensonEmily Dickenson Manic DepressionManic Depression

Vincent van GoghVincent van Gogh EpilepsyEpilepsy

Albert EinsteinAlbert Einstein DyslexiaDyslexia

John F. KennedyJohn F. Kennedy Addison’s DiseaseAddison’s Disease

Rita HayworthRita Hayworth Alzheimer’s DiseaseAlzheimer’s Disease

Ray CharlesRay Charles Primary GlaucomaPrimary Glaucoma

Stephen HawkingStephen Hawking Amyotrophic Lateral Amyotrophic Lateral SclerosisSclerosis

Jackie Joyner-KerseeJackie Joyner-Kersee AsthmaAsthma

The other birth that may never The other birth that may never have taken placehave taken place

Is your own!Is your own!

Lessons of “Gattaca”Lessons of “Gattaca”Proper Perspectives in the Genetic AgeProper Perspectives in the Genetic Age

Genetic determinism is wrongGenetic determinism is wrong

The triumph of the human spirit in those who The triumph of the human spirit in those who are genetically “inferior”are genetically “inferior”

What is lacking in Nature is more than made What is lacking in Nature is more than made up for by sufficient Nurtureup for by sufficient Nurture

““There is no gene for the human spirit”There is no gene for the human spirit”

Physical health is certainly not a sufficient Physical health is certainly not a sufficient condition for a good life; it might not even condition for a good life; it might not even be a necessary condition for a good life.be a necessary condition for a good life.

The quest for the healthy baby should be The quest for the healthy baby should be put in proper perspectiveput in proper perspective

There should not be prejudice against the There should not be prejudice against the “unhealthy”“unhealthy”

“Three things are said to evidence the wisdom and greatness of the Chinese people. They invented gunpowder and failed to invent firearms. They invented printing, and didn’t think of newspapers. They invented the compass and failed to discover America.

Paul Ramsey (1972)Paul Ramsey (1972)

A similar attitude, I believe, should be adopted A similar attitude, I believe, should be adopted toward future possible applications of toward future possible applications of biomedical knowledge…. Leon Kass,….has biomedical knowledge…. Leon Kass,….has written: ‘when we lack sufficient wisdom to written: ‘when we lack sufficient wisdom to do, wisdom consists in not doing. Caution, do, wisdom consists in not doing. Caution, restraint, delay, abstention are what this restraint, delay, abstention are what this second-best (and, perhaps, only) wisdom second-best (and, perhaps, only) wisdom dictates with respect to the technology for dictates with respect to the technology for human engineering…. We must all get used human engineering…. We must all get used to the idea that biomedical technology makes to the idea that biomedical technology makes possible many things we should never do’.” possible many things we should never do’.”

Paul Ramsey, “Genetic Engineering,” Bulletin of the Atomic Scientists [December 1972]: 14

1940

The wisdom of not using the new power?

TUTORIALTUTORIAL DISCUSSIONDISCUSSION TOPICS:TOPICS:

The President’s Council on Bioethics, The President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Beyond Therapy: Biotechnology and the Pursuit of HappinessPursuit of Happiness (2003) (2003)

Read, in particular, Section C “Ethical Read, in particular, Section C “Ethical Analysis” of the Report.Analysis” of the Report.

1. Explain the Report’s concerns for safety 1. Explain the Report’s concerns for safety in the eugenic application of PGD.in the eugenic application of PGD.

2.2. Explain the Report’s concerns for Explain the Report’s concerns for equality in the eugenic application of equality in the eugenic application of PGD.PGD.

3.3. Explain the Report’s concerns for the Explain the Report’s concerns for the consequences for families and society in consequences for families and society in the eugenic application of PGD.the eugenic application of PGD.

4.4. Critically evaluate the Report’s concerns Critically evaluate the Report’s concerns above.above.