ethical issues-in-genetics-and-preimplantation-genetic-diagnosis4633
TRANSCRIPT
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Ethical Issues in Genetics and Pre-Implantation Genetic Diagnosis
Dr Ainsley NewsonCentre for Ethics in MedicineUniversity of Bristol
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Ethics and genetics…• Can confidentiality be breached to warn relatives?
• When is it ethical to offer genetic testing or screening?– Should couples have access to genetic information when
deciding whether to continue a pregnancy?
– Should we let young adolescents have genetic tests to tell them about their future health?
• What should be done if a testing indicates ‘non-paternity’?
• Should we use PGD to help couples avoid having a child who will be deaf?
• Should insurers have access to genetic information?
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Genetic information…• Is there anything special about ‘genetics’?
– Uniquely identifies people (except twins)– Shared with families
– Predictive of future health
– Easily obtainable– Available before birth – May be of interest to third parties
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Ethics and genetics…• Common ethical themes and principles in clinical
genetics:– Non-directiveness
• Value-neutral practice
– Confidentiality: individuals and families
– Promoting informed consent– Avoiding psychological harm
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Confidentiality & non-disclosure• Confidentiality is important
– Promotes trust and honest exchange of information
• What should be done if there are implications for other family members and consultand won’t tell?– Who ‘owns’ the information?
– Breaching confidentiality sometimes sanctioned• Intervention available; Identifiable
party at risk; Benefit outweighs harm; Time?
• Happens rarely in practice
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Predictive testing in children3 key arguments against testing:
1. Testing fails to respect future autonomy2. Testing young people breaches
confidentiality3. Testing may cause psychological harms
• Family bonds• Impact on self-esteem and feelings of adequacy
• But: little empirical evidence for either position
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Prenatal testing & ‘minor’ conditions• Traditionally, PND offered for ‘serious’ genetic
diseases– Early onset, poor prognosis, low quality of life
• Now: less risk in testing; more genes known– PND sometimes offered for:
• achondroplasia, deafness, BRCA
• What should be taken into account in deciding whether to perform PND?– Medical opinion?
– The ‘lived experience’ of the condition?
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Misattributed Paternity• Genetic testing sometimes throws up unexpected
information, eg misattributed paternity• Should people be given unexpected non-medical
information they have not requested?– Increase autonomy by having full information?
– Father’s right to know?– Potential for harm?– Scope of clinical genetics services?
• Who should be told?
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Implications for insurance• UK: Moratorium on the use of predictive genetic
test results until 11/2011– Over these limits: can only use approved tests
• Only HD approved to date, BRCA expected
– Can use negative results to counter family history
– Cannot be asked to have a genetic test– Cannot be asked to disclose a relative’s result– Do not have to disclose results obtained after policy
starts
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PGD compared with PND• Some couples choosing PGD have made difficult
decisions about termination of pregnancy and are keen to avoid this difficult choice again
• PGD may be morally preferable to PND:– Ethically neutral choice: positive outcome (healthy
pregnancy) simultaneously balances the negative outcome (embryo destruction)
– Identification with an embryo is not as significant as an emotional connection to a foetus developing in the womb
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Ethical issues in PGD• Status of the embryo
– Do full human rights begin at conception?– Is destruction of unsuitable embryos wrong?
• Reproductive freedom vs. social interests– Does society have the right to dictate what
reproductive decisions individuals should make?
• Discrimination against those with disabilities– Does the use of PGD amount to a negative
valuing of people living with the condition being selected against?
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Ethical issues in PGD (2)• Safety?
– Long-term safety not yet demonstrated– More evidence required
• Resource Allocation?– PGD is expensive
• Psychological harm to parents and child– Very stressful process
– Knowledge of procreative history: effect on future child?
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Contentious applications of PGD• Preimplantation tissue typing
– Concerns and child welfare
• Sex Selection– Concerns about sex ratios and
gender stereotypes
• Selecting for non-medical traits– Concerns about ‘slippery
slopes’ and expectations on children
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On the horizon…• Pharmacogenetics• Near-patient genetic testing• Testing foetal DNA in maternal blood• “Personal genomics”• PGD for late-onset or multi-factorial conditions