Given the chance, would you have your genome sequenced? While some people would step right up, others may not want to know the information. As medical testing and citizen- or patient-driven genomics become less expensive and more available to the general public, some people are scraping their cheeks for cells, spitting the saliva containing their DNA into test tubes, and then shipping the samples to laboratories for testing. Many are motivated by the prospect of learning more about themselves and their families.
Would you want your genome sequenced if it showed you were at risk for a disease with no treatment?
Policy makers, scientists, and private citizens around the world who are interested in genomic research are discussing complex issues regarding ethics, social identity, and personal health. Having your genome sequenced can generate unexpected findings. The information gained from genome sequencing cannot be “unlearned”: it may change the way you think about your health and the health of your family, who you are, and how you see yourself in the world. For instance, would you want your genome sequenced if it showed that you were at risk for a disease with no treatment? Would you share such information with your family? Deciding whether you want to know or not can be a difficult choice.
Genomic sequencing and technologies also raise ethical and legal questions about how genomic information will be used. In 2008, the United States passed a law – the Genetic Information Nondiscrimination Act (GINA) – that prohibits the use of genetic information to discriminate against people in employment decisions and health insurance coverage. The law was intended to reduce concerns about discrimination that might have kept people from getting genetic tests that could benefit their health. GINA also allows people to participate in research studies without fear that their employers or health insurance companies might use DNA information against them.
The use of genomic information affects not only humans, but also plants and animals. For instance biodiversity research, the study of the variety of life on Earth, is becoming more and more dependent on high-quality tissue and environmental samples for DNA sequencing. At the same time, field collection of these samples is becoming difficult due to rising concerns worldwide that the natural assets of biodiversity-rich nations need protection from over-sampling, excessive commercialization, and habitat destruction. Today, global collaborations among research organizations, research initiatives, and biobanks enhance the trust of countries and organizations that help to protect biodiversity, and provide legal and transparent access to these samples for research – with clear agreements ensuring that the countries providing the samples will gain some benefit from the genomics research.
Throughout the exhibit, these ethical, legal, and social questions are posed to visitors, who will have many opportunities to explore where they stand on these issues.