Writing Genetics and Health over the past year-and-a-half has been a rewarding experience partly because I’ve come into contact with so many incredible people. Professor Gaia Bernstein of Seton Hall Law School is one such person. We originally met while discussing genetic discrimination between our two blogs (she used to guest blog at PrawfsBlawg). And today, I have the honor of interviewing her for the Genetics and Health interview series.
1. Over the recent years, what have been some major changes or challenges to the law pertaining to genetic discrimination and other aspects of genetic privacy?
It would probably be fair to say that there has not been a major change in legal protection for genetic information recently. Privacy law in the United States is a patchwork of federal and state laws. These laws are often enacted to react to a new technological threat to privacy. Genetic privacy laws follow the same pattern – federal and state legislatures have reacted to concerns about genetic discrimination and, currently, both federal and state laws encompass provisions that offer partial privacy protections. These protections are incomplete and where state law is concerned they are inconsistent across state lines.
There has been much ado about the legislation of a federal genetic privacy law. Yet, despite several attempts such a law has not yet been enacted. As the number of available genetic tests grows many are concerned that genetic discrimination by insurers and employers will become a prevalent phenomenon. Nevertheless, the status quo at this point is maintained.
2. What do you think we should be most concerned about regarding the genomic revolution?
Many people believe that the gravest threat of the genomic revolution is genetic discrimination. I believe the greatest concern is actually under-utilization of genetic testing technology caused by fears of genetic discrimination.
My survey of empirical studies of genetic discrimination shows that the threat of genetic discrimination has been over-emphasized. Surprisingly, despite the growth in the number of available genetic tests, genetic discrimination by employers and insurers is rare and if anything is on the decline. The problem is that people are greatly concerned about genetic discrimination and the lack of comprehensive legal protection and are, therefore, reluctant to test. Prenatal testing and testing by people who already manifest symptoms and are seeking to ascertain a diagnosis is less affected. But, empirical studies show that testing for adult onset diseases, such as Huntington’s Disease, breast cancer and colon cancer is inhibited by fear of discrimination. This is particularly disconcerting where individuals do not test for preventable diseases that could greatly benefit by early detection, such as colon cancer.
I think we should shift our concerns from genetic discrimination to the effects on the diffusion of genetic testing technology. The enactment of a federal genetic discrimination statute is important, at this point, not in order to deter genetic discrimination but in order to change individuals’ risk perceptions and encourage them to test.
3. Are there many law students interested in science and technology and what resources are available to them?
Over the past decade there has been a tremendous surge of interest, course offerings and employment opportunities in intellectual property law. While in the mid-1990s many schools barely offered an introductory course in intellectual property law, a large number of schools now offer a diverse spectrum of intellectual property courses.
At the same time, fewer schools offer law and science and law and genetics courses. I have noticed a great interest in these topics among our students at Seton Hall Law School. It is possible, however, that my experience is unique because Seton Hall tends to draw students interested in these topics. It has one of the nation’s leading health law programs and is located in the heart of New Jersey’s pharmaceutical industry.
Students who study Law and Genetics tend to find out that it is not a regular legal course in two ways. First, it does not involve the study of an area of law. Instead, it deals with the legal implications of the genetic revolution on a large spectrum of legal areas, such as health law, criminal law and family law (to name just a few). Second, since in many areas the law has just started evolving to accommodate the science of genetics, there are fewer statutes and cases to learn and more policy analysis about the preferred way in which the law should evolve. This makes it a particularly challenging and exciting course to take.
4. DNA testing is now available via the Internet and other offline vendors. What would you tell the average consumer about these commercially available genetic tests?
An important concern about these kits is the seclusion in which the individual goes through the testing process. The test taker receives the results at home without genetic counseling. Yet, professional guidance is important for the interpretation of the implications of the test results.
Few genetic diseases have a one-to-one correlation, that is, if you carry the genetic mutation you are going to have the disease. At the same time, genetic information has an enormous cultural force. People tend to believe that their genes in a sense define them, their identity and their destiny. Although told that despite testing positive for a certain genetic mutation they only have a 30% chance of actually getting the disease individuals tend to ignore the actual statistics concluding that they are going to get sick. We call this “genetic determinism.”
Genetic determinism is likely to be exacerbated in the absence of professional guidance. It is worrisome because people use genetic information to make medical decisions and important life decisions, such as should I get married? Should I have children? Should I go to medical school? Detaching the testing process from supervised counseling greatly reduces the benefits of testing and may actually be detrimental to the individual.
5. What kinds of differences between countries have you observed in attitudes towards genetics and technology?
Technology often affects social values, such as privacy, identity or autonomy. These social values differ from country to country. Consequently, the social and legal reactions to the very same technology vary as well. I will give a specific example involving relative conflicts regarding genetic testing in two countries: the United States and Israel.
Sometimes when a person tests positive for a certain genetic mutation the genetic counselor advises him to warn his relatives who may also be carriers of the genetic mutation. In many cases, people do go ahead and warn their relatives. But, sometimes, people prefer not to warn because they feel their carrier status is private or because they are estranged from their relatives. The question becomes: Should the genetic counselor warn the relatives? The answer is not easy because of the conflict between the medical professional’s duty of confidentiality toward the patient and the professionals’ duty to warn.
Different conceptions of identity in Israel and the United States lead to different resolutions of this conflict. The American conception of identity is relatively more individualistic then the Israeli one that mixes an individualistic conception with an emphasis on the community. Unsurprisingly, Israeli law specifies in a statute the circumstances in which medical professionals should warn the relatives of the genetic condition over the patient’s objections. U.S. law on the other hand is much more hesitant about imposing such a duty on medical professionals, focusing more on the rights of the individual patient than on the members of his family. Furthermore, evidence shows that genetic counselors in the United States rarely proceed to warn relatives where the patient refuses to reveal the information.
Thanks, Gaia! Your work on technology, law, and society will make it possible for everyone to enjoy the benefits of genetic/genomic developments with less fear of discrimination and violation of privacy. Goes to show that we need lawyers just as much as scientists! Don’t anybody dare argue with me on that.