President Pasquerella is joining an Alumnae Association-sponsored voyage, “In the Wake of the Vikings,” that will take the group from Scotland to Denmark and Norway by ship over the next week.
She’ll blog about her adventures as often as the itinerary allows, and we’ll post new installments here as they arrive.
The seven-day cruise begins in Glasgow, Scotland, and stops first at the wild and beautiful Orkney, Shetland, and Hebridean Islands of Scotland. Then the group will cross the North Sea to view the fjords of Norway and finally travel on to explore Copenhagen, Denmark.
June 12: Landing in Edinburgh earlier today, President Pasquerella mused about Genetic Technology, Scotland, and Angelina Jolie.
We arrived in Edinburgh, Scotland, from Hartford, Connecticut, early this morning, after stops in Detroit and Amsterdam. The last time I was in this magnificent, magical city was 13 years ago when I was lecturing at a technology and philosophy conference at the University of Aberdeen. My family, colleagues, and I took the train down for a few glorious days in the midst of our research project. Funded under a Department of Energy grant to explore the ethical, social, and legal implications of the Human Genome Project, my work focused on the societal risks of technological advances in genetic research that have preceded thoughtful reflection regarding the ethical limits of their use. I was particularly concerned about how genetic tests could be used by employers to discriminate against asymptomatic workers whose results reveal information regarding future disease, disability, premature death, and the likelihood of passing on genetic conditions to their children. I was also fascinated by how the decision making of legislatures around the world was influenced by the ethical principles at the center of the debate over proposed protective legislation for employees and alternative claims of business necessity by employers.
In the intervening years, both U.S. state and federal laws, notably the 2008 Genetic Information Nondiscrimination Act, have been passed, restricting the use of genetic testing or genetic information in employment matters. Similarly, individual nations within Europe and the European Union explicitly prohibit discrimination based on genetic testing and information. Most interesting to me, then and now, are the global differences in the approaches to a common concern. Whereas ethical arguments in the U.S. and the U.K. were predominantly based on privacy considerations, Continental European law has emphasized protecting the worker’s human dignity and autonomy. To be sure, the notions of dignity and autonomy include keeping the employer from intruding upon the worker’s private life, but they also assure that supervision is not overly intense, impersonal, or intrusive; that it leaves the employee some freedom concerning, and control over, the means of performing the tasks assigned. The recognition of human dignity in the law indicates a high regard for the worker as a citizen and an intelligently participating member of a community, even on the employer’s premises.
It is incontrovertible that today we have many more legal protections in place to guard against genetic discrimination. At the same time, however, we have a much broader range of diseases for which we can test, and the cost of these tests has dropped significantly. In fact, private companies are now directly marketing to consumers. Moreover, a Supreme Court ruling, rendered exactly a year ago, struck down attempts by one company, Myriad, to patent genes that exist in nature. This decision is likely to open up the market, making low-cost, genetic testing even more accessible to the general population.
While access to medical testing and meeting the demands of distributive justice is often at the basis of patient advocacy carried out by medical ethicists like me, in this case it is the expanded accessibility of medical testing that is at the locus of a variety of policy and practice concerns. First, there is often no counseling that accompanies the test results by these private companies, which might reveal predispositions to genetic diseases for which we currently have no cure, such as Huntington's disease or Alzheimer’s. Second, there are no clearly established industry standards for weighing risk factors related to genetic markers—determining whether one falls into high-, medium-, or low-risk categories. Federal consumer protection agencies have begun to pay attention to this issue since a genetic testing company like 23andMe might find someone at high risk for rheumatoid arthritis, while another company could list the same person as low risk based on the same sequence of DNA.
These first two considerations are inextricably linked to a third issue that is a cornerstone of medical ethics, namely informed consent and being given the information necessary to make a free, deliberate, and autonomous decision about what to do with one’s own body. Yet, there is still much we don’t know about the significance of genetic findings. Consider, for instance, the flurry of media attention Angelina Jolie received when she revealed that she had undergone a prophylactic double mastectomy because she tested positive for the BRCA 1 gene, which has been used to predict heightened risk for breast and ovarian cancers. Jolie’s mother died from ovarian cancer at a young age, and Jolie was told she faced an 87 percent chance of “inheriting” cancer. During the weeks and months following this story, television, magazine, and newspaper commentators asked, “Should every woman be tested for BRCA 1 and BRCA 2?” How should an individual woman assess and make an informed medical decision when told that only 5–10 percent of breast cancer cases are related to this hereditary predisposition, but that it creates a “future diary” leading to a high chance of developing breast or ovarian cancer in one’s lifetime if the test results are positive? In addition, what if there is more information than one bargained for regarding paternity? How does an individual resolve moral dilemmas around the implications for family members who may not want to know about increased risks, but who may now be implicated (for instance, a twin sister?) Further, in 2008, data recorders and programmers admitted that even anonymous samples can be linked back to individuals, leaving the most intimate aspects of a person’s life open to unwanted scrutiny and possible discrimination if released.
This is not to suggest that people should never undergo such testing, only that, once again, technology is far ahead of policies safeguarding the protection of patient rights and human dignity. Genetic testing is different from other types of tests because physicians cannot always foresee the range of information that will be revealed and the implications for an individual’s life. While researchers in the U.K. are forbidden from disclosing to patients any genetic information that comes to light in the course of a clinical study, doctors in the U.S. have been pushing for the practice of revealing this information to patients as part of their professional obligations. Once again, they may be appealing to different moral principles in justifying their respective stances. Yet, in both cases, we need to weigh the physical and psychological costs to the patient, and indeed to society as a whole, when medical practices are implemented in the absence of widespread community conversations and clearly articulated professional norms regarding standards of care.
• On June 13, from Edinburgh Old Town: Liberal Learning, the Death Eaters, and the Vulgar
• On June 14, from Glasgow, Scotland: The Metaphysics of MHC
• On June 19, from Norway: En Route to Copenhagen