Enhancement – Genetic and Cosmetic Pharmacology

1. Enhancement – Genetic and Cosmetic Pharmacology Orla Sheils

2. Enhancement • Breakthroughs in genetics present us with a promise and a predicament. • The promise is that we will soon be able to treat and prevent a host of debilitating diseases. • The predicament is that our newfound genetic knowledge may enable us to manipulate our nature – • to enhance our genetic traits and those of our children. • Although most people find at least some forms of genetic engineering disquieting, it is not easy to articulate, why?

3. Enhancement • What is wrong with re-engineering our nature? “ • In this session we will explore these and other moral quandaries connected with the quest to perfect ourselves and our children. • Some argue that the pursuit of perfection is flawed for reasons that go beyond safety and fairness. • The drive to enhance human nature through genetic technologies is objectionable because it represents a bid for mastery and dominion that fails to appreciate the gifted character of human powers and achievements.

4. Enhancement • Perhaps the genetic revolution will change the way philosophers discuss ethics and will force spiritual questions back onto the political agenda. • In order to grapple with the ethics of enhancement, we need to confront questions largely lost from view in the modern world. • Since these questions verge on theology, modern philosophers and political theorists tend to shrink from them. • But our new powers of biotechnology make these questions unavoidable. ..

5. Enhancement • controversial issue regarding biotechnology is the prospect of employing it for the purpose of human enhancement. • demarcation problem: • What is enhancement and what is it being contrasted with? • primary modification people have in mind is genetic, but it is worth looking at non-genetic modifications

6. Demarcation • therapeutic modification is one that brings a trait that was below a recognizable, species-wide norm up to that norm. • an enhancement modification in contrast as one that is a non-therapeutic improvement. • The norm referred to here is the one that separates conditions of health from those of disease

7. BUT • the health/disease distinction is of limited use in explaining the enhancement/therapy distinction

8. Value judgments • what constitutes the norm? • Is the judgment that someone is diseased ? • Is a particular condition a disease independent of whether we think it is bad or undesirable? • Can a condition be a disease in one culture and not in another?

9. If what constitutes enhancement varies with individual or culture • -if enhancement is in the eye of the beholder – • then it is not clear that we can sensibly articulate an (ethical) issue about enhancement as such.

10. Enhancement/therapy distinction • One class of cases are modifications that, strictly speaking are enhancements, but whose purpose is to respond to (the threat of) a disease. • For example, a modification that improves people's resistance to particular diseases beyond the normal capacity would count as an enhancement but its purpose would be disease prevention and so arguably therapeutic. • Cf vaccination

11. ambiguity in the idea of "normal traits." • Moreover, normality itself often refers to a range within a trait rather than to a sharp line. • Short stature

12. Biotechnology covers a range of technologies and procedures, many of which could conceivably be employed for enhancement. But the most discussed enhancement technology is one in which a person's genome is altered.

13. Genetic modifications are often separated into two kinds - somatic and germline. • difference is whether the particular genetic modification affects the individual's gametes so that the modification can be passed on to the individual's offspring. • The object of a somatic modification is a modified individual, • but the object of a germline modification is a modification that becomes part of the individual's legacy or inheritance.

14. Designer Children • Used pejoratively to describe children of parents more concerned with fashion than valuing children for their own sake. • Is choosing a same race child designing the child you will have? • It is a truism that bears repeating that once a person has capacity to choose and awareness of that capacity- then choice is inevitable.

15. The Nuffield Council report on genetic screening distinguishes between legitimate and illegitimate uses of genetic screening. • It makes the boundary between legitimate choices and unacceptable eugenics choices at the point where: • “the decisions are subjugated to those aims considered to be of benefit to the population or the state”.

16. How it still happens

17. Truth • One in six couples have problems conceiving.

18. Male infertility • Male has poor sperm • Intrauterine insemination (AIH) • Assisted Reproduction

19. Male infertility • Male has no sperm • Artificial insemination by donor (AID) • Assisted Reproduction

20. Female infertility • Anovulation (PCO/ HH) • Ovulation induction • Assisted Reproduction

21. Female infertility • Tubal factor/ Endometriosis • Assisted Reproduction

22. Female infertility • Ovarian failure • Assisted Reproduction with donor eggs

23. The solution or the problem?

24. Let’s copy nature + egg (oocyte) sperm

25. The first 25th July 1978 Louise Brown, Oldham General Hospital

26. The media

27. The team

28. Favoured by chance

29. The downs? • Emotional, physical drain • Poor success rates, still. • Not state funded • Passing on the “problem”? • What about ethical issues?

30. Informed consent Confidentiality Research involving genetic material Screening (PGD, antenatal) Sex selection Saviour siblings Selecting for disability Surrogacy Sperm, egg donation Sale of gametes Postmenopausal motherhood Rationing access to reproductive services Human reproductive cloning Fetal material in research and treatment Genetic enhancement and therapy Endless list…

31. Informed consent • Relevant information • Opportunity for deliberation • Capacity (competence) to understand information • Voluntary • Relevant cases • Natalie Evans –UK • MR v TR • concerning a separated couple that disagree about whether frozen embryos (fertilised and stored when the couple was still together) can be used to impregnate the woman over the objections of the man.

32. Research on genetic material • Consent • Adequate information/ counselling • Impact • Relevance

33. Preimplantation Most acceptable Risks not known Does the embryo have moral status? Antenatal Visible embryo Involves destruction of life already established Justified? Does the fetus have moral status? Screening

34. Screening • Moral status came into focus during the abortion debate.

35. What is it to have moral status? • It means that harm matters to the given thing (the moral status of which we are assessing).

36. The fetus • Part of the human species • Sentient (feels pain) • Qualifies for personhood (potential)

37. PGD

38. Sex selection • Preimplantation Genetic Diagnosis • One blastomere • PCR/ FISH

39. Therapeutic Avoid inheritable disease Haemophilia Duchenne muscular dystrophy Non-therapeutic Family balancing Preference Replacement Procreative autonomy (how far?) Sex selection

40. Saviour siblings • One created to cure/ save other sibling. • Tissue match • Designer babies? • Not creating child for itself. • This is a commodity rather than a person.

41. Saviour Siblings • Kantian prohibition on using people merely as a means to and end? • might justifiably be argued if the new sibling were created solely for the purposes of generating a donor for the existing child

42. Postmenopausal motherhood • Welfare of the child • Resource allocation • Natural?

43. Surrogacy • Arrangement (altruistic) • Contract (commercial/ US) • Surrogate – carry the pregnancy • Genetic • Gestational

44. Is it right? • Allows couples to have a child which otherwise could not have been born. • Women with very high risk for pregnancy can contemplate a genetic offspring. • Women who enjoy pregnancy can do it for money. • Altruistic

45. Traditional way of producing children is subject to prejudice or preference • not only for a certain type of partner but • subconsciously at the particular type of child mating with that partner will produce.

46. Genetic Choices – Disability • Serious practical possibility for people to choose the type of children they will have: • Ante-natal testing followed by abortion • Selection using IVF -only implant embryos with required genetic makeup • Is the central issue one of procreative liberty? • Freedom to procreate is not something limited to the individual • It is different to freedom of speech etc

47. In the UK and US ante-natal testing is run on the basis of personal choice. • Nevertheless, the state has set up the programme. Is there a danger that the state/society has a subliminal influence on parents to produce the best child they can. • Are there economic motives relating to cost benefit analysis and expense incurred by society if a disabled baby is born?

48. Selecting for disability • Is it acceptable to deliberately choose to have a disabled child?

49. Deaf Lesbian Case • Lesbian couple decided to have a deaf baby. • Many deaf people assert deafness is not a disability rather a social construct. • Criticised for their choice –saying it was a pity to deprive a child of the full range of abilities open to it. • If it is ok to select a child without disability is it ok to select for one with?

50. Not always a sharp boundary between knocking out a disability and enhancing a trait. • More clear-cut with single gene disorders, but this applies to a small proportion of disease types. • Not a sharp boundary between bottom of normal range and disease. • Often a subtle spectrum • e.g. Achondroplasia or clinical depression