AUG 21, 2013 01:00 PM PDT

In sickness and in health: variables effecting genome sequencing ethical issues

  • Assistant Professor, Primary Faculty for the Program in Genomics and Ethics, Medical College of Wisconsin
      Kimberly Strong, PhD is the primary faculty with the Program in Genomics and Ethics at the Medical College of Wisconsin's Center for Bioethics and Medical Humanities and she also holds a secondary appointment with the MCW Human and Molecular Genetics Center. She has degrees in Biology, Genetic Counseling, and Bioethics and has direct experience in preimplantation genetic diagnosis, embryology, genetic counseling, psychosocial research, patient advocacy and research ethics and her lectures have included bioethical issues related to assisted reproductive technologies, gamete donation, genetic counseling, genetic testing and stem cell research. Dr. Strong's broad academic area of expertise is in the application and limits of 'empirical bioethics', particularly its value in informing the discourses surrounding contentious and emerging technologies. Her current research revolves around exploring the ethical and social issues involved in the use of whole genome sequencing.


    In addition to the exciting promise that genome sequencing holds, concerns are also often described. These concerns relate to: privacy/confidentiality of findings; impact of findings on insurability and discrimination; autonomy and the impact of one's findings on others; questions of clinical utility; the potential for psychological distress; and equity of access. While each of these concerns may constitute a reason for some not to pursue sequencing technology at this time, others remain ready and willing to move forward immediately. Clearly the weighing of risks and benefits are different for different people. Delineating these differences will take time and require empirical exploration. One seemingly obvious bot often neglected differentiation is the starting point for individuals (or family members) - whether they are sick or healthy. Decision making in the context of illness likely (and understandably) influences the weightings given to risks and benefits - perhaps even reframing the balance of promise and concern entirely (a "game changer"). This talk will present the various concerns put forward regarding genome sequencing and discuss the ways in which these are more and/or less relevant depending upon one's relative health situation.

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