Ethical Issues in Genetics and Pre-Implantation Genetic Diagnosis


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Ethical Issues in Genetics and Pre-Implantation Genetic Diagnosis

  1. 1. Ethical Issues in Genetics and Pre-Implantation Genetic Diagnosis Dr Ainsley Newson Centre for Ethics in Medicine University of Bristol
  2. 2. Ethics and genetics… <ul><li>Can confidentiality be breached to warn relatives? </li></ul><ul><li>When is it ethical to offer genetic testing or screening? </li></ul><ul><ul><li>Should couples have access to genetic information when deciding whether to continue a pregnancy? </li></ul></ul><ul><ul><li>Should we let young adolescents have genetic tests to tell them about their future health? </li></ul></ul><ul><li>What should be done if a testing indicates ‘non-paternity’? </li></ul><ul><li>Should we use PGD to help couples avoid having a child who will be deaf? </li></ul><ul><li>Should insurers have access to genetic information? </li></ul>
  3. 3. Genetic information… <ul><li>Is there anything special about ‘genetics’? </li></ul><ul><ul><li>Uniquely identifies people (except twins) </li></ul></ul><ul><ul><li>Shared with families </li></ul></ul><ul><ul><li>Predictive of future health </li></ul></ul><ul><ul><li>Easily obtainable </li></ul></ul><ul><ul><li>Available before birth </li></ul></ul><ul><ul><li>May be of interest to third parties </li></ul></ul>
  4. 4. Ethics and genetics… <ul><li>Common ethical themes and principles in clinical genetics: </li></ul><ul><ul><li>Non-directiveness </li></ul></ul><ul><ul><ul><li>Value-neutral practice </li></ul></ul></ul><ul><ul><li>Confidentiality: individuals and families </li></ul></ul><ul><ul><li>Promoting informed consent </li></ul></ul><ul><ul><li>Avoiding psychological harm </li></ul></ul>
  5. 5. Confidentiality & non-disclosure <ul><li>Confidentiality is important </li></ul><ul><ul><li>Promotes trust and honest exchange of information </li></ul></ul><ul><li>What should be done if there are implications for other family members and consultand won’t tell? </li></ul><ul><ul><li>Who ‘owns’ the information? </li></ul></ul><ul><ul><li>Breaching confidentiality sometimes sanctioned </li></ul></ul><ul><ul><ul><li>Intervention available; Identifiable party at risk; Benefit outweighs harm; Time? </li></ul></ul></ul><ul><ul><ul><li>Happens rarely in practice </li></ul></ul></ul>
  6. 6. Predictive testing in children <ul><li>3 key arguments against testing: </li></ul><ul><ul><li>1. Testing fails to respect future autonomy </li></ul></ul><ul><ul><li>2. Testing young people breaches confidentiality </li></ul></ul><ul><ul><li>3. Testing may cause psychological harms </li></ul></ul><ul><ul><ul><li>Family bonds </li></ul></ul></ul><ul><ul><ul><li>Impact on self-esteem and feelings of adequacy </li></ul></ul></ul><ul><li>But: little empirical evidence for either position </li></ul>
  7. 7. Prenatal testing & ‘minor’ conditions <ul><li>Traditionally, PND offered for ‘serious’ genetic diseases </li></ul><ul><ul><li>Early onset, poor prognosis, low quality of life </li></ul></ul><ul><li>Now: less risk in testing; more genes known </li></ul><ul><ul><li>PND sometimes offered for: </li></ul></ul><ul><ul><ul><li>achondroplasia, deafness, BRCA </li></ul></ul></ul><ul><li>What should be taken into account in deciding whether to perform PND? </li></ul><ul><ul><li>Medical opinion? </li></ul></ul><ul><ul><li>The ‘lived experience’ of the condition? </li></ul></ul>
  8. 8. Misattributed Paternity <ul><li>Genetic testing sometimes throws up unexpected information, eg misattributed paternity </li></ul><ul><li>Should people be given unexpected non-medical information they have not requested? </li></ul><ul><ul><li>Increase autonomy by having full information? </li></ul></ul><ul><ul><li>Father’s right to know? </li></ul></ul><ul><ul><li>Potential for harm? </li></ul></ul><ul><ul><li>Scope of clinical genetics services? </li></ul></ul><ul><li>Who should be told? </li></ul>
  9. 9. Implications for insurance <ul><li>UK: Moratorium on the use of predictive genetic test results until 11/2011 </li></ul><ul><ul><li>Over these limits: can only use approved tests </li></ul></ul><ul><ul><ul><li>Only HD approved to date, BRCA expected </li></ul></ul></ul><ul><ul><li>Can use negative results to counter family history </li></ul></ul><ul><ul><li>Cannot be asked to have a genetic test </li></ul></ul><ul><ul><li>Cannot be asked to disclose a relative’s result </li></ul></ul><ul><ul><li>Do not have to disclose results obtained after policy starts </li></ul></ul>
  10. 10. PGD compared with PND <ul><li>Some couples choosing PGD have made difficult decisions about termination of pregnancy and are keen to avoid this difficult choice again </li></ul><ul><li>PGD may be morally preferable to PND: </li></ul><ul><ul><li>Ethically neutral choice: positive outcome (healthy pregnancy) simultaneously balances the negative outcome (embryo destruction) </li></ul></ul><ul><ul><li>Identification with an embryo is not as significant as an emotional connection to a foetus developing in the womb </li></ul></ul>
  11. 11. Ethical issues in PGD <ul><li>Status of the embryo </li></ul><ul><ul><li>Do full human rights begin at conception? </li></ul></ul><ul><ul><li>Is destruction of unsuitable embryos wrong? </li></ul></ul><ul><li>Reproductive freedom vs. social interests </li></ul><ul><ul><li>Does society have the right to dictate what reproductive decisions individuals should make? </li></ul></ul><ul><li>Discrimination against those with disabilities </li></ul><ul><ul><li>Does the use of PGD amount to a negative valuing of people living with the condition being selected against? </li></ul></ul>
  12. 12. Ethical issues in PGD (2) <ul><li>Safety? </li></ul><ul><ul><li>Long-term safety not yet demonstrated </li></ul></ul><ul><ul><li>More evidence required </li></ul></ul><ul><li>Resource Allocation? </li></ul><ul><ul><li>PGD is expensive </li></ul></ul><ul><li>Psychological harm to parents and child </li></ul><ul><ul><li>Very stressful process </li></ul></ul><ul><ul><li>Knowledge of procreative history: effect on future child? </li></ul></ul>
  13. 13. Contentious applications of PGD <ul><li>Preimplantation tissue typing </li></ul><ul><ul><li>Concerns and child welfare </li></ul></ul><ul><li>Sex Selection </li></ul><ul><ul><li>Concerns about sex ratios and gender stereotypes </li></ul></ul><ul><li>Selecting for non-medical traits </li></ul><ul><ul><li>Concerns about ‘slippery slopes’ and expectations on children </li></ul></ul>
  14. 14. On the horizon… <ul><li>Pharmacogenetics </li></ul><ul><li>Near-patient genetic testing </li></ul><ul><li>Testing foetal DNA in maternal blood </li></ul><ul><li>“ Personal genomics” </li></ul><ul><li>PGD for late-onset or multi-factorial conditions </li></ul>