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Why Athletes Need Genetic Enhancement


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Edinburgh Law School (2008, Nov)

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Why Athletes Need Genetic Enhancement

  1. 3. <ul><li>Questions of Sport, </li></ul><ul><li>Edinburgh Law School </li></ul><ul><li>7 November, 2008 </li></ul>
  2. 4. <ul><li>As gene transfer techniques develop, their use will become increasingly integral to health enhancement. </li></ul><ul><li>Athletes require safer forms of enhancement that are more likely to accord with their own biochemistry. </li></ul>
  3. 6. <ul><li>Modification + training </li></ul>
  4. 7. <ul><li>Elite sports celebrate the production of new forms of human enhancement </li></ul><ul><li>T he te chnologie s of human enhancement are morally required for use by athletes, by virtue of their broader cultural integration </li></ul>
  5. 8. <ul><li>Australian Law Reform Commission (2001-2003) </li></ul><ul><li>WADA Gene Doping Workshop (2002) </li></ul><ul><li>US President’s Council on Bioethics (2002/3) </li></ul><ul><li>First commercial test for performance gene (2004/5) </li></ul><ul><li>The WADA Stockholm Declaration (2005) </li></ul><ul><li>BASES Position Statement (2006/7) </li></ul>
  6. 9. <ul><li>Australian Law Reform Commission (2001-2003) </li></ul><ul><li>WADA Gene Doping Workshop (2002) </li></ul><ul><li>US President’s Council on Bioethics (2002/3) </li></ul><ul><li>First commercial test for performance gene (2004/5) </li></ul><ul><li>The WADA Stockholm Declaration (2005) </li></ul><ul><li>BASES Position Statement (2006/7) </li></ul>Synthetic Biology Stem Cell Research – footballer saving stem cells Mamallian Cloning – cloned race horse
  7. 10. <ul><li>Have they happened yet? </li></ul><ul><li>To a large degree, they are a priori </li></ul><ul><ul><li>Experimental medicine cannot be used for enhancement purposes </li></ul></ul><ul><ul><li>There is no evidence of efficacy, so risk is high and use irresponsible. </li></ul></ul><ul><ul><li>As such, they are unethical and illegal uses of regulated technologies </li></ul></ul>
  8. 11. <ul><li>Ethical debate is a process not an end state. </li></ul><ul><li>It concerns organizational culture, along with public engagement. </li></ul><ul><li>It is continually refined and this should be evident in the practice of institutions. </li></ul>
  9. 12. <ul><li>Australian Law Reform Commission (2001-2003) </li></ul><ul><li>WADA Gene Doping Workshop (2002) </li></ul><ul><li>US President’s Council on Bioethics (2002/3) </li></ul><ul><li>First commercial test for performance gene (2004/5) </li></ul><ul><li>The WADA Stockholm Declaration (2005) </li></ul><ul><li>BASES Position Statement (2006/7) </li></ul>
  10. 13. <ul><li>‘ The Protection of Human Genetic Information’ </li></ul><ul><li>Terms of Reference </li></ul><ul><ul><li>Issues of privacy of human genetic samples and information </li></ul></ul><ul><ul><li>Inappropriate discriminatory use of human genetic samples and information </li></ul></ul>
  11. 14. <ul><li>38-1 The Australian Sports Commission should monitor the use of genetic testing and genetic information for identifying or selecting athletes with a view to developing policies and guidelines for sports organisations and athletes. The policies and guidelines should be developed in consultation with the Human Genetic Commission of Australia (HGCA), Human Rights and Equal Opportunities Commission (HREOC, the Office of the Federal Privacy Commissioner (OFPC) and other stakeholders. </li></ul>
  12. 15. <ul><li>‘… if the AIS were to use genetic information to select athletes, it would be necessary to ensure that the information was reasonably reliable and relevant . If not it would be possible to argue that the information was being used to discriminate unlawfully against individuals rather than to genuinely administer a Commonwealth program aimed at identifying and developing athletes’. </li></ul>
  13. 18. <ul><li>“ Though it is too soon for sports legislation, Rogge favours a declaration of principle now: &quot;Yes&quot; to genetic screening, which is the examination of a prospective athlete's genes to see which sport would be the perfect fit (perhaps less than five years away). &quot;No&quot; to genetic manipulation” (Clarey, 2001). </li></ul>
  14. 19. <ul><li>ENHANCEMENT </li></ul><ul><li>Safety </li></ul><ul><li>Sanctity of life </li></ul><ul><li>Long-term health </li></ul><ul><li>Coercion </li></ul><ul><li>SELECTION </li></ul><ul><li>Discrimination </li></ul><ul><li>Conflicts of Interest </li></ul><ul><li>Confidentiality and Privacy </li></ul>
  15. 20. <ul><li>Liability </li></ul><ul><li>Genetic Essentialism </li></ul><ul><li>Pre- vs Post- natal </li></ul><ul><li>Limits of Autonomy </li></ul><ul><li>Proper role of (Sports) science/medicine </li></ul><ul><li>What kind of life is worth living </li></ul>
  16. 21. <ul><li>Talent Identification is discriminatory, but discrimination is not always unjust. </li></ul><ul><li>In order to be just, discriminatory practices must be relevant </li></ul><ul><ul><ul><li>(recall the ALRC guidelines) </li></ul></ul></ul><ul><li>There is no such proven relevance to discrimination on the basis of genetic tests for ability. </li></ul><ul><li>Such use is not acceptable at present, but could change. </li></ul>
  17. 22. <ul><li>How would data be used by? </li></ul><ul><ul><li>Athletes </li></ul></ul><ul><ul><li>Sponsors </li></ul></ul><ul><ul><li>Anti-Doping Organizations </li></ul></ul><ul><ul><li>Coach/Team Owner/Manage </li></ul></ul><ul><ul><li>Insurance companies </li></ul></ul><ul><ul><li>Athlete’s physician </li></ul></ul><ul><li>Policy should aim to minimize the risk of their being conflicts of interest in the application of genetic tests. </li></ul>
  18. 23. <ul><li>Privacy </li></ul><ul><ul><li>Right to control information about oneself that others may have </li></ul></ul><ul><li>Confidentiality </li></ul><ul><ul><li>Duty to respect right to privacy </li></ul></ul><ul><li>It is difficult to foresee how genetic information might be appropriated by various organizations and we must vigilant over interest claims. </li></ul>
  19. 24. <ul><li>Genetic essentialism </li></ul><ul><li>Pre- vs post-natal </li></ul><ul><li>Limits on autonomy </li></ul><ul><li>Health Reduction rationale </li></ul><ul><li>Proper role of (Sports) science/medicine </li></ul><ul><li>What kind of life is worth living </li></ul>
  20. 25. <ul><li>Mistaken assumption that genes are sole determinants of phenotypic characteristics. </li></ul><ul><li>Genetic Counseling and public engagement activity must become a focus for sport and exercise science, along with their methodological development from wiithin the social sciences. </li></ul>
  21. 26. <ul><li>Difference in kind, rather than degree. </li></ul><ul><ul><li>One involves decision about what kind of person comes into the world, the other involves a decision about how that person might best succeed in life. </li></ul></ul><ul><li>Implies different regulatory authorities. </li></ul><ul><li>It is not obvious that their imminence varies and policies should reflect this. </li></ul><ul><ul><li>Eg. WADA cannot attend to only the post-natal applications, as they currently do. </li></ul></ul>
  22. 27. <ul><li>Athlete </li></ul><ul><li>Parental </li></ul><ul><li>Autonomy cannot be straightforwardly applied in our case. Also, be aware of challenges to ‘autonomy’ within bioethical theory (concerns about runaway individualism ). </li></ul>
  23. 28. <ul><li>Utilization of technology as part of health management is a legitimate obligation of the medical professional. </li></ul><ul><ul><li>Genetic testing should be utilized for harm reduction, but not as a mechanism for exclusion. </li></ul></ul>
  24. 29. <ul><li>Can we map onto sport the same ethics found outside of it? </li></ul><ul><ul><li>Not entirely. We should adhere to traditional medical ethical guideline and those of IRBs, but recognize that we face new, uncertain times where conclusions are not self evident. </li></ul></ul><ul><li>What is the relationship between science and medicine on the matter of genetic tests? </li></ul><ul><ul><li>Even greater than before. Bioethics takes on this relationship and must become an integral part of our concerns. </li></ul></ul>
  25. 30. <ul><li>How does this help us think about what kind of sports systems we develop? </li></ul><ul><li>How should this shape the regard an individual might have for such tests? </li></ul><ul><ul><li>Right to ignorance vs. responsibility to reduce harm? </li></ul></ul><ul><li>We are morally compelled to promote inclusion and participation in youth. </li></ul>
  26. 31. <ul><li>Does genetics require a new kind of ethics for health care and science? </li></ul><ul><ul><li>Does the technology imply a greater range of non-therapeutic applications that stretch the limits of traditional approaches to medical ethics? </li></ul></ul><ul><li>Partially. New forms of familiar issues arise requiring additional guidelines and rules of conduct </li></ul>
  27. 32. <ul><li>Invest into developing sufficiently safe forms of enhancement is preferable to trying to prohibit dangerous enhancements, though both processes must exist. </li></ul><ul><li>Curently, the attention is on the latter, but this will become increasingly difficult to maintain. </li></ul>
  28. 34. stelarc, extra ear
  29. 35. Alba, the transgenic bunny
  30. 36. <ul><li>The researchers determined that people do not feel comfortable using a pill to enhance a trait they believe to be fundamental to their identity. But less-fundamental traits, including concentration, are more acceptable targets </li></ul><ul><ul><li>Jason Riis, Joseph P. Simmons, and Geoffrey P. Goodwin. &quot;Preferences for Enhancement Pharmaceuticals: The Reluctance to Enhance Fundamental Traits&quot; Journal of Consumer Research: October 2008) </li></ul></ul>
  31. 38. aimee mullins, photo by Nick Knight
  32. 39. Dr Aandy Miah Professor in Ethics & Emerging Technologies University of the West of Scotland Fellow, Institute for Ethics and Emerging Technologies Fellow, FACT (Foundation for Art & Creative Technology ) Author: Genetically Modified Athletes: Biomedical Ethics, Gene Doping & Sport (2004) London & New York: Routledge Editor: Human Futures: Art in an Age of Uncertainty (2008) FACT & Liverpool University Press / University of Chicago Press Chapter on Oscar Pistorius & others on human enhancement technologies.
  33. 41. Monday 10 November Andy Miah, Aubrey de Grey, Kevin Warwick