Medical Ethical Dilemmas: Prenatal Diagnosis and Selective Abortion

Guido de WertMaastricht UniversityFHML, Dept. Health, Ethics & Society

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Outline

• Prospective parents at high risk• Reproductive options• Ethics of

– genetic counseling– Prenatal Diagnosis selective abortion– IVF/Preimplantation Genetic Diagnosis

selective transfer

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Reprogenetics: prospective parents at high risk

- family history, mainly* Mendelian disorders* Chromosomal disorders

- result of prenatal screeningtest (combitest, etc.)

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Reproductive options

• Accept risk/’genetic lottery’

• Refrain from having children

• ‘Avoidance’:– Oocyte donation– Artificial Insemination Donor sperm– Prenatal Diagnosis– IVF/Preimplantation Genetic Diagnosis

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Ethics of genetic counseling

• Historical background: eugenics

• Reaction: a different normative framework

Core principle: respect for reproductive autonomy

• non-directiveness of the counselor

• informed consent

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Types of non-directive counseling

• Information-only model• Pro• Con

• Interpre(ta)tive model• Pro• Con

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Types of non-directive counseling

• Moral education model• Pro• Con

• Deliberative model• Pro• Con

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Case 1 Down syndrome

• woman at high risk to conceive a child with DS

• content and risk of moral education

• content and risk of deliberation

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Prenatal diagnosisPD ≠ selective abortion

What about conditional access?* Pros:

- paternalism- risk of miscarriage (0.3%)- costs

* Cons- reassurance- prepare for birth of affected child- provide optimal neonatal care

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Ethics of (selective) abortion

Beyond ‘fetalism’: simplistic one-dimensionality

The moral point of view: all relevant interests and values:

- status of the fetus- interests of the future child- interests of prospective parents- interests of handicapped people

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The status of the fetus: eternal dissent

1. the metaphysical concept of a person: what matters is the ‘radical capacity’. - fertilisation: ‘conceptionalism’- individuation (2 weeks)- brain development (6-8 weeks)

Implication: abortion is murder, unless- (maybe) very early- JJ Thomson is right

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Thomson

The argument:- for the sake of debate: fetus is a person …- right to life ≠ right to use the woman’s body- the latter only if she accepted special responsibility- if not: charity, not moral duty

Comment:- do we have moral duties only towards

people for whom we have voluntarily assumed a special responsibility?

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2. Beyond the metaphysical concept• confuses persons - potential persons• personhood presumes:

• presently exercisable abilities• most: self-consciousness

• what about the moral status of potential persons?• preferences of ‘third parties’• symbolic value• the potentiality argument

– strong version– weak version

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A moral conflict• interests of woman (couple) vs moral status of fetus• dominant view/’overlapping consensus’ (Rawls):

relative status• abortion may be ‘the lesser of two evils’• ‘good reasons’?

• rape• medical indications• psychosocial reasons?

– ‘nurturance matters’ (Gilligan)• condition of the fetus?

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The ‘disability rights’ critique• Claim: ‘PD/SA is at odds with the rights and interests of

people with disabilities’

• Arguments include:– the ‘expressivist’ argument:

• discrimination • denial of equal worth

– the ‘loss of support’ argument• public support will dwindle

• Comments: no juxtaposition of interests

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A moral justification of selective abortion• ‘gesellschaftliche Nutzwert’?

• social Darwinism

• the perfect child?

• prevention of (serious) suffering• the child

» worse off?» if not, still a harmful condition

• the family

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The slippery slope• structure of the slippery slope argument:

- A B- B is unacceptable, so- don’t accept A

• 2 variants

– logical: no sharp boundaries

– empirical: prediction - evidence?

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A detailed list of indications: a useful antidote?– pros

• avoid misuse

• clarity

– cons• impossible in view of both nature’s diversity (variable expression)

and progress in medicine

• the moral importance of contextualization

• adverse societal effects: stigmatization?

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The medical model

• Principle: ‘PD only for risk factors for the particular future child’s health’

• Morally relevant variables include:• severity of the disorder, taking into account

preventive/therapeutic options• age of onset of the disease• penetrance of the mutation• personal situation of the woman/couple

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The right to information• informed consent

• the result(s) of the test– unexpected findings:

the right not to know– medically irrelevant information:

the right to know * the sex of the fetus

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Case: I’ll continue pregnancy only if it’s a girl …• couple has 2 sons & indication for karyotyping• “if it’s a boy again, I’ll opt for TOP”• what to do?

• what’s the big fuzz?• withhold PD in order to prevent misuse?• refer to colleague?• inform about sex only in third trimester?

– legal right to access file– limit right to access file?– are all pregnant women suspected persons …?

• ‘moral education’/deliberative model of counseling?

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PD for late-onset dirorders: HD as paradigm case

• Objections (Post)- child will have many decades of good living- parents are not directly affected- ‘humanist considerations’:

- suffering is part of life- moral ambiguity of perfect child

• Comments- high risk of serious disorder- ‘genetic perfectionism’?- prospect of eventual fate imposes severe burden

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Case: PD of HD – unconditional access?Couple at-risk requests PD of HD ‘just for reassurance’.

Abortion is not a option for moral reasons.

Comment• understandable – but what about the carrier-child?

– harmful knowledge– right not to know

• counseling: ‘moral education’ or directiveness based on professional ethics?

• couples usually accept a restrictive policy

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PGD: early PD

PGD = pars pro toto

Includes- IVF

- hormones- oocyte pick up

- biopsy at day 3- PGD stricto sensu- selective transfer pregnancy?

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Possible advantages of PGDHigh risk of affected child

– (almost) certainty right from the start– avoid psychological burdens of

(repeated) selective abortion– moral advantage?

High risk of miscarriage– pregnancy

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Categorical objections to PGD?

• unjustified selection?

• unjustified biospy?– the totipotency argument

• disproportionally burdensome?

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PGD of mutations in breast cancer genes?

Case

A woman/couple asks for PGD, because several relatives have died from HBOC, and she carries a BRCA1 mutation. After counseling, she/the couple is even more convinced that PGD is the better option for her/them.

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Working Party PGD

Relevant considerations:- high risk/penetrance: breast cancer 60%-85%,

ovarian cancer 20-60% (cfr family history)- serious disorder- preventive options (periodic exams, preventive

surgery) are only partially effective and burdensome - request well-considered- respect for reproductive autonomy

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Dutch politics: towards a prohibition …

• Argument: ‘just a risk factor’

• Comments – even if incomplete penetrance: still a

high risk of serious disease– departure from guidance so far– ‘PD yes, PGD no’?!– top-down one-dimensionality

• Political wisdom: May 26, 2008