Nazin Sedehi ‘14, an interdisciplinary humanities major, wrote this reflection on the website created by her biology class, Ethical Issues in Genetics.
In our class, Professor Laura Rivard emphasized that discussions about emerging technologies should take place before these scientific developments become a reality. We also learned through various readings that an understanding of these ethical issues requires knowledge of basic sciences and how these principles have been applied in the history of science.
Ideally, there is a channel of open communication between scientists and the public. In this spirit, we decided as a class to call ourselves Genetics Generation and to create a website, www.knowgenetics.org, that involves the general public in these pertinent conversations. There are so many ways that genetic technology plays a role in our everyday life, and I think the website showcases this.
On the website there are sections, written in an accessible manner, dedicated to whole genome sequencing, genome therapy, direct-to-consumer genetics, and gene patents. We also discuss the ethical issues behind these technologies.
The format of the website allows for visitors to encounter and interact with genetics. There is a quiz to test your “GQ” (genetic quotient) and to review principles that are not as clear to you. There are case studies that allow for you to vote on real-life situations ranging from doctor-patient confidentiality to the clarity of informed consent to the ownership of genetic information. Blogs are posted regularly to keep the information on the website up-to-date.
As a college student and a student of science, I think of this website as a crash course in genetics for people who do not have an extensive background in science. I think of my peers and my parents and how much involvement in the discussion is important now, as technology advances so quickly.
If we assume that this particular technology will be available in the near future, what will we do with it? Who will regulate it? Who will be able to utilize it? Is this ethical? These are all open-ended questions and throughout the semester-long course there was never one point or perspective we were able to agree on completely as a class.
We also understand that a lot of the genetic concepts that are making news headlines today are complex. This is why we have volunteered to become “scientific interpreters” and to increase the public’s understanding of what is happening in the world of genetics today. The goal of the website is to eliminate misunderstandings about genetics and provide impartial information to the public.
– Nazin Sedehi ‘14