Genome Atlantic | Genomics & You

Genomics & You

Genomics has the potential to change our world. Any new technology that brings such power also brings huge responsibility to manage that power and to consider the implications of the change that is possible.

GE³LS stands for genomics-related ethical, environmental, economic, legal and social issues.

It’s essentially looking at all the ways that the research and application of genomics can impact our lives, as a way of helping us determine what we as a society are comfortable with.

Topics in GE³LS are far-ranging, and can include things like:

Biobanks
Cloning
Genetic testing
Genetically modified organisms
Privacy
Patenting

Generally speaking, the questions involve topics that impact on societal values such as privacy, power and rights, such as who can benefit from a new technology, or how do we ensure a balance between individual privacy and the societal good that can come from genetic tests.

GE³LS questions can be researched along with the genomics research, or they can be discussed in public arenas to ensure that everyone has the opportunity to contribute to the decisions that must be made.

Across Canada, research in GE3LS is documented in an online database developed by Genome Canada.

GE³LS questions often lead to legal or policy decisions. Genome Canada has developed a policy discussion series, which addresses many current issues related to genomics. The sessions can be viewed on video on their website. The goal is to ensure that policy makers receive well-researched, diverse input to help them make informed policy.

Interesting Issues

The list of GE³LS topics is endless. The more we know about genomics, the more we can do with that information. And therefore, there are more decisions to make.

A few timely topics include biobanks and direct to consumer genetic testing.

Biobanks

A biobank is a collection of human tissue and/or body fluid samples. In itself, that poses very few ethical questions. However, for many reasons, including criminal investigations and research, the samples are linked to personal information about the person who gave the sample.

This raises issues about the privacy and confidentiality rights of individuals whose tissues samples and personal data are being collected in the biobank. The role of GE³LS researchers is to determine the acceptable balance between collecting and labeling these important samples, and protecting the personally identifiable information from those who provided the samples.

Direct to Consumer Genetic Testing

It sounds like the stuff of science fiction, but now that the price of sequencing the human genome has dropped so dramatically, there are companies that offer this service directly to consumers for a few thousand dollars.

In itself, there’s nothing wrong with providing a small DNA sample (usually by taking a small swab from inside your mouth), and having it sequenced.

But there are many questions about the effectiveness of having these tests done, and the potential emotional and ethical issues the results may raise.

For instance, what can the consumer do with this information? How accurate is it? If a consumer’s test shows that he or she is more susceptible to a certain disease, does that mean they will get it for sure? Does that mean that an insurance provider has the right to stop covering them? Does the consumer have the obligation to divulge that information? And should they tell their parents and siblings, given that genetically-carried disease might run in their family?