Before they start their freshman year, most students are sent a large yet predictable envelope full of forms to fill out – medical information, housing requests, and other routine documents. However, this year if you were an incoming freshman at UC Berkeley, there was one extra package mailed to you over the summer: a saliva sample kit and a request to submit your DNA for genetic analysis. The intention was to use the results of the DNA tests for a new orientation program on the topic of personalized medicine, in the hopes that students would learn best by studying their own DNA and thus gain valuable insight into the customization of medical treatment.
Both UC Berkeley and Stanford, which has implemented a similar program for its graduate and medical students, have received mixed feedback regarding these programs. On the one hand, they are praised for innovation and for making cutting edge technology available to students that they might never otherwise experience. On the other hand, many ethical dilemmas have arisen from these programs which have been criticized for being implemented too quickly and without enough thought put into their planning. There are three main issues that concern critics in the bioethics community: the manner in which universities ask students to give them genetic data, what happens to the information, and how the students themselves will interpret and react to the results.
Some argue that by offering the genetic testing at an incredibly low cost, they are encouraging students to participate without fully thinking through the risks. This is also potentially a form of coercion, as is the “peer pressure” associated with the program. One student may feel that by not taking part in the test, they will be missing out on a valuable part of the program and thus be alienated from the community.
Surprisingly, the issue of what happens to the students’ genetic information is not as clearly defined as one would expect from universities who are expert in carrying out scientific research projects. The physical DNA samples are destroyed within a year, but the results of the allele testing are kept on file, with very little indication of how they are to be preserved or used in the future. The informed consent forms that students were required to fill in were also worded very much like a research study, leading to further confusion and ambiguity as to what would happen with the results. Defendants of the programs argue that the risk of violation of students’ privacy is not a concern. They say that the test results could never be used for future research because of the manner in which they were gathered, and that the genes tested (which included genes related to how the body metabolizes alcohol, certain vitamins and lactose) were specific and unimportant in the scheme of the field of genetic research. However, perhaps student should be concerned that they are unwittingly donating their genetic information for testing later on?
Finally, one of the main risks of these programs is that the students who decide to participate may not fully understand the results of the testing, and may in turn make poor, uninformed decisions based on their newly revealed genetics. For example, a student may find out that they have a certain gene that metabolizes alcohol efficiently, and thus make a rash decision to drink more in future without fully understanding the implications. Students will most likely have never had any genetic testing done before, and so are inexperienced in integrating information about their genomes into their day-to-day lives. While the programs offer information to students via lectures, this does not guarantee that every student is truly making an informed decision.
Overall, the programs are innovative and definitely have merit, as they are taking a step in the right direction of engaging the next generation with new technology and incorporating it into their education to make medical and genetic issues seem more personal and relevant. Most of the ethical issues raised by critics are directly related to the fact that the programs were not planned or thought through as thoroughly as they could have been. By better defining the scope of the studies, and by being more specific about what was going to happen to the results in the long term, the universities could have avoided questions about the privacy of student’s genetic data. Furthermore, they could have consulted ethics experts who would have predicted many of these accusations of “recklessness” and other ethical criticisms. Using this feedback the universities could have duly avoided such criticisms by, for example, ensuring that each student was fully informed and unlikely to make rash decisions based upon a poor interpretation of the results.
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