Medical Ethical Dilemmas:

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Medical Ethical Dilemmas Prenatal Diagnosis and
Selective Abortion
Guido de Wert Maastricht University FHML, 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 diagnosis

• PD ? 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 womans 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
• - dont 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 natures 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 childs 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 Ill continue pregnancy only if its a girl

• couple has 2 sons indication for karyotyping
• if its a boy again, Ill opt for TOP
• what to do?
• whats 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 PGD

• High 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