Imagine this: you visit your clinician, undergo genetic testing, and then you are handed a miniature hard drive containing your personal genome sequence, which is subsequently uploaded onto publicly accessible databases. This may sound like science fiction, but it is scientific fact, and it is already happening.
In an article published in the upcoming issue of Science, University of Alberta researcher Tim Caulfield and co-authors highlight the need to proceed with caution when it comes to personal genomics projects that represent research milestones but are also fraught with ethical, social and clinical implications. Caulfield, who is the Canada Research Chair in Health Law at the U of A and professor and research director in public health sciences, is recognized as one of the foremost experts in health law research in Canada.
Scientists predict that within five years DNA sequencing technologies will be affordable enough that personal genomics will be integrated into routine clinical care. Companies are responding by offering their services for ancestry tracing, forensics, nutritional advice and reproductive assistance. It won’t be long before companies are able to offer Facebook-like social networking services centred around our genomes.
Once we have our personal genomic information, what will we do with it and how might this information be used outside the medical context" How will physicians educate patients about the significance of genetic risk information" Will already-strained health-care systems be able to cope with the inevitable influx of “worried well” patients seeking follow-up investigations for genetic risks that are not clinically meaningful"
Caulfield and his colleagues pose these questions and warn that the routine generation of individual genome sequences will pose challenges to our health-care system. They argue that only clinically meaningful genomic test results should be integrated into medical decision-making—however, this will require clear standards, multidisciplinary collaboration and careful consideration of the ethical, social and clinical implications.
About the author: Tim Caulfield is a Professor in the Faculty of Law and the Faculty of Medicine and Dentistry at the University of Alberta in Edmonton, Alberta, Canada. In 2001 he received a Canada Research Chair in Health Law and Policy. Over the past several years, he has been involved in a variety of interdisciplinary research endeavours that have allowed him to publish over 100 articles and book chapters. He has been a visiting scholar at the Hasting Center for Bioethics in New York and the Houston Law School, a Visiting Fellow at Stanford University’s Program in Genomics, Ethics and Society and is a Senior Fellow with the Einstein Institute for Science, Health and the Courts. In 2006 he became a member of the Canadian Academy of Health Sciences.