medical research

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Ruqaiijah Yearby, Professor of Law at Case Western University, discusses some of the core themes surrounding human genetic & reproductive technologies at the 2011 Tarrytown Meeting. See notes below. The Tarrytown Meetings bring together people working to ensure that human biotechnologies and related emerging technologies support rather than undermine social justice, equality, human rights, ecological integrity and the common good. Find out more about the Tarrytown Meetings here: http://www.geneticsandsociety.org/article.php?id=5561 To find more videos, check out the Tarrytown Youtube channel: http://www.youtube.com/user/TarrytownMeetings Presentation Notes: Before the conference I reviewed several abstracts and papers, and found four key themes and directives that connect all the various topics being discussed at this year's conference. The limitations of science; The need to ground our discussion in history while recognizing the evolving nature of our society; The need for social justice; And the lack of viable options to address violations of social justice/human rights in the name of science. I will briefly discuss these themes and suggest some directives. I. Science Science cannot cure all of our ills. Science has the potential to improve the human existence, not to replace it. Thus, the goals of science must be secondary to the objectives of society, not superior. Finally, developments in science can not be synonymous with the criminal justice system. Scientific endeavors such as biobanking originally lobbied for as a means to treat disease, now are used as criminal investigation warehouses. II. History and Evolution The objectives and methods of science have not changed, just the technology. Meaning that science remains governed by utilitarianism, with the promise of a population benefit. The promised benefit may change, but the real question remains is the promise ever realized? If there is a benefit realized it usually does not inure to those who bore the the burden, which is unjust. The Henrietta Lacks case is a perfect example where her cells have made billions of dollars for researchers, pharmaceutical co., and many others, but her descendants remain poor and lack access to health care. Thus, they have not received any benefits from the research while bearing the burdens. Is this unjust? It depends on what justice means now? III. Social Justice In the past, Justice meant fairness and protecting those who were vulnerable from exploitation. This definition has been replaced by fair opportunity and inclusion. Consequently, justice is when society provides the most vulnerable with a fair opportunity to be included in research that has the potential to help a society in which the vulnerable are denied citizenship. An example, is outsourcing medical research to developing countries who will not be able to afford the new drug and whose genetic information will be used to get a patent that provides money to the US and other developed markets; countries who will deny these research subjects citizenship. IV. Law What are the laws that govern us and do they provided protection? Yesterday, many presenters discussed the fact that the laws of protection in the US and abroad were often illusory or not binding. Thus, the question becomes whether law is the right platform for addressing these issues. For example, neither state informed consent laws, nor the 4th Amend, which prohibits illegal searches and seizures, prevent the unauthorized collection of your genetic material for research or criminal databases. Thus, many question whether we need need to be governed by values and principles, even if they are not static, custom, or binding. For example, should we be governed by human rights principles, the 4 bioethical principles, or by the theories of public health? V. Directives: We must harness science to improve lives not to further our need for greatness, fulfill our intellectual curiosity, ...