Lecture 11 Eugenics and Genetics Anxieties BMS 2250

Lecture 11 Eugenics and Genetics: Anxieties BMS 2250 Medical Ethics Semester 1, 2006 -07 P. C. Lo

(A) Recapitulation Moral excitements over genetic science and technology Joseph Fletcher, Gregory Pence

“Today we are learning the language in which God created life…. With this profound new knowledge, human kind is on the verge of gaining immense new power to heal…. ” President Bill Clinton The New York Times, June 27, 2000, D 8.

(B) General Anxieties Literature Movies

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

1932

Central London Hatchery and Conditioning Centre 2540 A. D. Human beings no longer produce living offspring. Instead, surgically removed ovaries produce ova that are fertilized in artificial receptacles and incubated in specially designed bottles

Reproductive conditioning Fetuses are conditioned differently Upper caste -- Alphas and Betas Lower caste -- Gammas, Deltas, and Epsilons

1940 The Sorcerer's Apprentice – we are incapable to control Nature’s awesome power

“Rape of nature” “Control is an illusion” “We should have some respect for that power”

Department of Precrime 2054 A. D. Can we arrest and convict someone for the future murder of a man whom he has not even met? Is it possible for the Pre-Cogs to be wrong? How far can pre-emptive strike go?

What happens if some of us can foresee the future? Does foreknowledge takes away human free will and responsibility? n Foreknowledge and Free Choice?

(C) To Have “Better Children” Three Eugenic Strategies in the Genetic Age

1. Eliminating the bad (“screening out”) Prenatal diagnosis 2. Selecting the good (“choosing in”) Preimplantation genetic diagnosis (PDG) 3. Redesigning for the better (“fixing up”) Genetic engineering From: Beyond Therapy (2003), p. 33

1. “Screening Out” Ultrasonogram, Amniocentesis, Chorionic villi sampling Tay-Sachs disease, anencephaly Downs Syndrome Multiple congenital anomalies ABORTION !!

Clinical Genetic Service Department of Health, HK Genetic Counselling Unit – offers genetic counseling for families Genetic Screening Unit -- operates two screening programmes for newborns, namely, glucose-6 -phosphate dehydrogenase (G 6 PD) deficiency and congenital hypothyroidism.

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

Practical difficulties To produce the desired result and only the desired result To avoid abnormalities, either by activating harmful genes or by inactivating useful ones Artificial chromosomes?

Ethical Worries Do parents have the right to pre-select traits for their descendents? To be discussed later

3. “Choosing In” -- PGD To detect genetic or chromosomal abnormalities in vitro

Non-therapeutic applications To pre-select the gender of a child To produce a child who could serve as a compatible bone-marrow or umbilical-cordblood donor for a desperately ill sibling

Practical difficulties, eugenics-wise Possible harm caused by removing blastomeres for testing? Many of the desirable human phenotypic traits are very likely polygenic likelihood of finding all the “desired” genetic variants in a single embryo is very small Interplay of nature and nurture Inconvenient and expensive

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

Ethical Worries People already using PGD to screen for disease markers might seek information also about other traits Once screening becomes automated, its cost comes down, or if society decides to reimburse for PGD, the use of this approach toward “better children” might well become the practice of at least a significant minority. From: Beyond Therapy (2003), p. 44.

To be prevented?

To be tested and prevented as well? Asthma, allergies, diabetes, heart disease? Deafness, Shortness in height, learning disabilities? Gender? “Gay Gene”? Should we allow couples to do these?

Issues What is normal and what is a disability or disorder, and who decides? Are disabilities diseases? Do disabled people need to be prevented from birth?

(D) The Big Debate Do parents have the right to pre-select traits for their descendents?

Yes, they do have the right to have a healthy child the right to a perfect child the right to have a child that fits the family the right to pre-select traits for our descendents “From chance to choice”!!

Furthermore Birth control (quality) – to give the best to our children To counteract Nature, which is indifferent, cruel, tyrannical, oppressive, hostile, reckless, relentless

No, they do not have that right Human beings should not play God Human beings should not fool (tamper with) Mother Nature

“Perfect” in what sense? Absence of severe disease or deformity Absence of flaws or imperfections presence of desired positive traits ! Value judgement! Perfect with the presence of a specific “flaw, ” e. g. , deafness? (“A matter of culture, not a matter of medicine!”)

“Perfect” (cont’d) A specific gender? The demand for “perfection” will increase in the case of the one-child family Danger of sliding down the slippery slope? Medicine as a servant of a particular culture and an agent of social discrimination?

2006 Deafness, obesity anorexia Medical attention? No, it is cultural. To have a better mood, to run faster, to look better Just cultural? No, it is the business of medicine.

Disease-free inheritance? “All of us carry genetic variants that predispose to illness; perhaps a few dozen for each of us. It is highly unlikely that all of these can ever be screened out. ” The President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003), p. 53.

Right to choose? Whose rights are we talking about? Who has the freedom to choose? For whose sake, then, are we doing genetic eugenics? To satisfy parents’ own interests more than that of the descendents?

Right vs. Obligation Parents’ reproductive freedom Freedom to have a desired or wanted child Freedom to control my heredity Parents reproductive obligation Obligation to screen out only the worst genetic defects Obligation to respect my child as an independent individual, not under my ownership

(E) Eugenics & Discrimination in early 20 th century: compulsory sterilization, euthanasia The Nazi programme: some people (the “unfit”) are better off dead than alive; their life is not worth living

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

Lee M. Silver 2 unequal classes of people in the future The Naturals vs. the Gen. Rich, i. e. , Gene-enriched (cf. the 2 casts in the Brave New World) The widening gap between “rich” and “poor”, genetically as well as economically 24 pairs of chromosomes; species separation! Silver, Remaking Eden (1997), pp. 4 -7, 246.

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

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

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

Two kinds of people A “made man” A “faith birth” A “vitro” An “utero” A “Valid” An “In-valid” A “de-gene-erate” “Genoism” – Discrimination on the basis of “genetic quotient”; social prejudice and stigmatization

Vincent: a product of “reproductive roulette” Anton: a product of parental choice “Leave a few things to Chance. ” “No, you should give the child the best possible start in life. He will be the best of you” Father likes Anton better, whom he deems is worthy of his name (Antonio)

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

Watch movie Chapter 3 8: 20 – 19: 56 Coda of additional feature

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

Abraham Lincoln Marfan Syndrome Emily Dickenson Manic Depression Vincent van Gogh Epilepsy Albert Einstein Dyslexia John F. Kennedy Addison’s Disease Rita Hayworth Alzheimer’s Disease Ray Charles Primary Glaucoma Stephen Hawking Amyotrophic Lateral Sclerosis Asthma Jackie Joyner-Kersee

The other birth that may never have taken place Is your own!

Lessons of “Gattaca” Proper Perspectives in the Genetic Age Genetic determinism is wrong The triumph of the human spirit in those who are genetically “inferior” What is lacking in Nature is more than made up for by sufficient Nurture “There is no gene for the human spirit”

Physical health is certainly not a sufficient condition for a good life; it might not even be a necessary condition for a good life. The quest for the healthy baby should be put in proper perspective There should not be prejudice against the “unhealthy”

Paul Ramsey (1972) “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.

A similar attitude, I believe, should be adopted toward future possible applications of biomedical knowledge…. Leon Kass, …. has written: ‘when we lack sufficient wisdom to do, wisdom consists in not doing. Caution, restraint, delay, abstention are what this second-best (and, perhaps, only) wisdom dictates with respect to the technology for human engineering…. We must all get used to the idea that biomedical technology makes 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?

TUTORIAL DISCUSSION TOPICS: The President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) Read, in particular, Section C “Ethical Analysis” of the Report. 1. Explain the Report’s concerns for safety in the eugenic application of PGD.

2. Explain the Report’s concerns for equality in the eugenic application of PGD. 3. Explain the Report’s concerns for the consequences for families and society in the eugenic application of PGD. 4. Critically evaluate the Report’s concerns above.