Procreative Beneficence and Disability Julian Savulescu Uehiro Professor of Practical Ethics

1. 1 Procreative Beneficence and Disability Julian Savulescu Uehiro Professor of Practical Ethics University of Oxford

2. 2 3 Principles of Reproductive Decision Making • Procreative Autonomy/Liberty • Procreative Beneficence • Public Interest

3. 3 Procreative Beneficence • couples (or single reproducers) should (have good normative reason to) select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information.

4. 4 An Argument in Favour (After Parfit) • Rubella epidemic • Mutated strain of rubella • Vaccination ineffective • Highly virulent • Women who conceive now are highly likely to have a child deaf, blind or intellectually disabled • If they wait several months, the epidemic will pass and they will likely conceive normal children • They should wait. It would be wrong to conceive now • Even though no one harmed – disabled child would not be worse off because he/she would not otherwise have existed • We should select the least disabled child

5. 5 Selecting the Best I • Choline in pregnancy improves IQ • You wish to have a child but the stocks of choline have run out. • If you wait a month, the stocks will be replenished and your child will be expected to have a higher IQ • You should wait one month and have a different child who can be given choline

6. 6 Selecting the Best II • You are having IVF for infertility. • You produce 10 embryos which are going to be tested for chromosomal abnormalities • The doctors ask you if you want a new genetic intelligence profile of your embryos – it tests for 39 genes using gene chip technology and can give a probabilistic prediction of future IQ • You should have the profile and choose the embryo expected to have the highest IQ • Premise: higher IQ makes life go better

7. 7 “Expected to have the best life” • “Expected” does not mean “will” • Those with the greatest gifts may squander them • Those with significant disabilities may have very good lives

8. 8 Decision-theoretic Consequentialism • One standard way of making decisions under uncertainty is to choose that option which maximizes expected value. • the expected value of adopting any course of action can be given by: • Pr(good outcome given that course taken) X V(good outcome) + Pr(other outcomes given that course taken) X V(other outcomes).

9. 9 Consequentialism • Consequentialism instructs the agent to: • 1. List all the relevant possible courses of action. • 2. List the possible outcomes of each action. 3. Estimate the probability that each outcome of each action will occur, given that the action in question is taken. • 4. Assign values to each possible outcome. • 5. Calculate the expected value of each possible outcome. This is the product of the value of that outcome and the probability of it eventuating, given that a particular action is taken. • 6. Calculate the expected value of each action. This is the sum of expected values of each the possible outcomes (or consequences) of that action. • 7. Choose the action with the greatest expected value.

10. 10 Example: knee replacement • Consider a person trying to decide whether to have a knee replacement for arthritis • weigh the pros and cons • how good/bad these are • how likely they are • how bad the pain and disability currently are • how much they will be alleviated by the operation • how likely the operation is to be successful • what the risks of the operation are • how bad the complications might be, how much the operation costs, in money and time, and the consequences of this • what the costs or benefits of waiting are. • Applies to hearing aid, laser surgery to achieve greater than 20/20 vision (hawk like vision), sonar

11. 11 What is the best life? • Life with the most well-being • Philosophers have exercised themselves for several thousand years on what constitutes well-being • There are various theories of well-being: hedonistic, desire-fulfilment, objective list • Not just absence of disease. • People trade length of life for non-health related well-being- smoking, alcohol, risk

12. 12 What is the best life? • We do have some idea of the good life • Social institutions and scientific research aimed at addressing this • Services to enable people lead good lives • Ask advice • Self help • Education of children

13. 13 Disability, Capability and Well-Being • Well-being • how well a life goes (goodness) • cannot distribute well-being • Capability • a state of the person which increases the probability of achieving a good life • Disability • a state of the person which decreases the probability of achieving a good life • disease is disability • Moral obligation to promote well-being through increasing capabilities and reducing disabilities

14. 14 What is a disability? • In 2001, Sharon Duchesneau and Candy McCullough, a deaf lesbian couple had their second child Gauvin • The women, who wanted to have a deaf child, conceived Gauvin through Artificial Insemination by Donor (AID), using sperm from a friend they knew to have five generations of inherited deafness in his family • They argued that: • Deafness is an identity, not a medical affliction that needs to be fixed • The desire to have a deaf child is a natural outcome of the pride and self-acceptance many people have of being deaf • A hearing child would be a blessing, a deaf child would be a special blessing • They would be able to be better parents to a deaf child than to one who was hearing • The child would grow up to be a valued member of a real and supportive deaf community • “Deafness is not a disability”

15. 15 Is Deafness a Disability? • Yes • A deaf person cannot hear music, the sound of wind, the crack of thunder or the seductive whisper of a lover. • The human voice is a fundamental part of the human condition and verbal communication a characteristic part of human culture. • Deafness also reduces the chances of realising a good life because it makes it harder to live, to achieve one’s goals, to engage with others in a world which is based on the spoken word. It is harder to get a job, harder to move in the world, harder to respond to emergencies • Signing may be a unique mode of communication but it is better to speak two languages than one

16. 16 An example • On the night of 10th of April, 2003, a school for deaf and mute children in Makhachkala in Russia caught fire. • Twenty-eight children aged 7 to 14 died and more than 100 were injured. • “Several children, some naked, jumped through windows to escape the inferno.” Rescuing the children was hampered because “each child had to be awakened individually and told in sign language what to do.”

17. 17 Capability/Disability Is Context Dependent • Deafness is not a disability in a very noisy world; but it is in our world • Atopic tendency • Asthma in developed world • Protection against worm infestation in developing world • X is a disability in circumstances C if: • X reduces the chances of a person realising a possible good life in circumstances C. • In order to decide whether a state is a disability or a capability we need to fix or predict the social and natural environment

18. 18 Biology/Psychology as Capability/Disability • Biological or psychological states can be predicted to be capabilities or disabilities in likely future environments • Our biology contributes not only to our health but to how well our life is likely to go

19. 19 Example: Self Control • In the 1960s Walter Mischel conducted impulse control experiments where 4-year-old children were left in a room with one marshmallow, after being told that if they did not eat the marshmallow, they could later have two. • Some children would eat it as soon as the researcher left. • Others would use a variety of strategies to help control their behaviour and ignore the temptation of the single marshmallow.

20. 20 Self Control • A decade later, they found that those who were better at delaying gratification had: • more friends • better academic performance • more motivation to succeed. • Whether the child had grabbed for the marshmallow had a much stronger bearing on their SAT scores than did their IQ. • Impulse control has also been linked to socioeconomic control and avoiding conflict with the law. • Poor impulse control is a disability

21. 21 Other Categories • Buchanan, Brock, Daniels and Wikler: “All Purpose Goods” • Intelligence • Memory • Self- discipline • Foresight • Patience • Sense of humour • Optimism

22. 22 Other Categories • “Hearing can become deaf but the deaf cannot become hearing.” • Future opportunity-enhancing: • Hearing • 4 limbs • “Open future” • Future opportunity-restricting • Deafness • Limb amputation (for apotemnophilia)

23. 23 Other Categories • Autonomy enhancing • Improving the psychological capacities necessary for autonomy • concept of self • ability to remember, understand and deliberate on relevant information • strength of will • foresight • empathy, etc • Our moral character: • empathy, imagination, sympathy, fairness, honesty, etc • Monkeys and grape exoeriment

24. 24 Other Specific Examples • Religiosity – capability or disability? • Criminality • Dutch family criminality – mutation in the MAO region of X chromosome • Aggression • Hawking claims genetic modification to reduce aggression is an important strategy in preserving humanity over next 100 years (Guardian 3/8/06)

25. 25 “Genes, not men, may hold the key to female pleasure” “genes accounted for 31 per cent of the chance of having an orgasm during intercourse and 51 per cent during masturbation” “ability to gain sexual satisfaction is largely inherited” “The genes involved could be linked to physical differences is sex organs and hormone levels or factors such as mood and anxiety.” The Age, June 8, 2005

26. 26 Should we enhance/select better people? “Better people” – more capabilities, less disabilities

27. 27 First Argument for Selection • 1. Choosing not to select is wrong (other things being equal) • Waiting vs selecting • If we should wait to have the child with the most capabilities, we should select

28. 28 Selection – after Parfit • Choosing not to select is wrong (other things being equal) • Conceive a child now – disabled • Wait - normal • Conceive a child now – IQ 100 • Wait and take some intervention – IQ160

29. 29 Second Argument: Consistency • We wait to maximise the environment to give our children the best opportunities – we wait till we have enough money to provide a good education

30. 30 Consistency • There is no difference between environmental and biological intervention • Environmental enhancements alter biology • Rats given stimulating environment vs prozac

31. 31 Consistency • Environmental manipulations affect biology • Maternal care and stress • hippocampal development • cognitive, psychological and immune deficits later in life • “Early experience can actually modify protein-DNA interactions that regulate gene expression,”(changes in methylation of DNA) Michael Meaney

32. 32 Third Argument: No difference to disease • If we accept selection against disease, we should accept selection of capabilities • Goodness of health is what drives a moral obligation to treat or prevent disease • Health is not what matters – health enables us to live; disease prevents us from doing what we want and what is good • But how well our lives goes depends on our biology (in part) • Drives a moral obligation to enhance and select

33. 33 Treatment/Enhancement Distinction • Habermas, Sandel, Kass – all accept treatment but reject enhancement • Abortion contraception not treatments but enhancements • Ageing is normal but bad – deafness, memory loss, impotence • Distinction is arbitrary – statistical. Not of intrinsic normative significance • Theresa Lewis execution for normal IQ • Picks out what is normally harmful

34. 34 Need Diversity • For Social Reasons • Need cognitive enhancement for social reasons • Low normal IQ as disability • For Biological Reasons • Introduce massive diversity through gen eng • Need gen selection to protect against gen degen • Not how we deal with epidemic – prevention and treatment

35. 35 Change Society, Not People • We should alter social arrangements to promote well-being, not biologically alter people • Related: “disability is socially constructed” • Response: • “Biopsychosocial fit” • We should consider all modifications, and choose the modification, or combination, which is best • Skin colour • Social modification and discrimination • Biological modification and environmental risk

36. 36 Social Not Biological Enhancement • Good Reasons to Prefer Social Rather Than Biological Intervention • If it is safer • If it is more likely to be successful • If justice requires it (based on the limitations of resources) • If there are benefits to others or less harm • If it is identity preserving • BUT VICE VERSA

37. 37 Social Construction of Disability • Disability is socially constructed when there are good reasons to prefer social intervention than direct biological or psychological intervention. • Biopsychosocial construction of disability: • Must consider reasons for and against intervention at all levels: • Social • Psychological • Biological

38. 38 Society Benefits from Variety/Disability Not obviously true – psychopathy Evolutionary accident Not clear that the current balance is optimal – status quo bias There will always be variety/disability by choice and by accidents/disease

39. 39 Discriminination • a two class society of the enhanced and the unenhanced, where the inferior unenhanced are discriminated against and disadvantaged all through life • Gattaca

40. 40 Responses • Nature alots advantage and disadvantage with no mind to fairness – natural inequality • Some are born horribly disadvantaged, destined to die after short and miserable lives. • Some suffer great genetic disadvantage while others are born gifted, physically, musically or intellectually. • nothing fair about the natural lottery • allowing enhancement could be used to reduce natural inequality.

41. 41 Egalitarian social institutions • how well the lives of those who are disadvantaged go depends not on whether enhancement is permitted, but on the social institutions we have in place to protect the least well off and provide everyone with a fair go. • People have disease and disability – egalitarian social institutions and laws against discrimination are designed to make sure everyone, regardless of natural inequality, has a decent chance of a decent life.

42. 42 Discrimination • How the biologically modified and unmodified are treated is our choice • Equal concern and respect is possible in a world of biological modification

43. 43 Self-defeating (or Unfair) • If everyone stands on tiptoes, no one sees better • But distinguish between • positional goods – height • Non-positional goods - memory • Question of justice – not particular to biological modification • If significant, make it free, like health care

44. 44 Parker’s Objection: Value of Loss, Suffering, Limitation and Mystery of Life • President’s Commission’s Beyond Therapy • “Traumatic memories, shame, and guilt, are, it is true, psychic pains. In extreme doses, they can be crippling. Yet, short of the extreme, they can also be helpful and fitting. They are appropriate responses to horror, disgraceful conduct, injustice, and sin, and, as such, help teach us to avoid them or fight against them in the future.”

45. 45 Beyond Therapy • “there appears to be a connection between the possibility of feeling deep unhappiness and the prospects for achieving genuine happiness. If one cannot grieve, one has not truly loved. To be capable of aspiration, one must know and feel lack. The world would be a sterile, monotonous place where everyone is the same, and the mystery and surprise of life is gone.” • Michael Sandel: we must be “open to the unbidden”

46. 46 Shakespeare • ‘The web of our life is of mingled yarn, good and ill together; our virtues would be proud if our faults whipp’d them not, and our crimes would despair if they were not cherish’d by our virtues.’ • “All’s Well that Ends Well” • [Mike Parker]

47. 47 Responses • Introduce suffering, difficulty, light and dark • Not all will enhance – 10% choose not to abort Down syndrome • There will be plenty of challenge and mystery left in an uncertain world • Better children may be possible; perfect children will not • One can choose to go to a good play rather than a poor one, and still experience the mystery of events as they unfold.

48. 48 Fails to Respect or Promote Value • Habermas: communicative dialogue • Sandel: humility and solidarity • Fail to respect autonomy • If X is to be respected or of value, then select or enhance X • Status quo bias to assume everyone in all circumstances has enough X

49. 49 Cheating • Only if rules ban it • Key issue is safety – caffeine

50. 50 Inauthentic • Achievement is product of selection or enhancement – like doping in sport • But why think we deserve credit for natural lottery • Depends on effort and will exerted, and volume of contribution of enhancement • Effort and struggle still required to be best • Enhancemetn can be expression of authenticity – becoming the person you really want to be