Rules for the Genome Era
Friday 25th January 2008 - 12:30pm - 2:00pm
Rules for the Genome Era
George M. Church·
Francis S. Collins · J. Craig VenterModerated by ·
Robert M. WinstonFriday 25 January
In this relatively early stage of the Genome Era, scientific and policy communities are struggling with many questions. In this session, considerable attention was given to clarify the work still required in the field before genetic data can be relied on for therapeutic purposes.
Some key points of the session:
• The common goal of researchers in the human genome arena is to determine with greater certainty the make-up of the human genetic code and the scope of variations between individuals.
• Advocates in the US are seeking legislation that would prevent discrimination based on DNA information. This is particularly important in the insurance sector and, more generally, in the workplace.
• To date, one of the biggest achievements has been the widely accepted ethic that basic fundamental information should be placed immediately in public databases for scientists to access equally and without undue restrictions.
• Intellectual property rights (IPR) are critical for the development of products but, at this stage in genetic studies, should not apply to basic scientific research. Holders of marketplace IPR should cross-license to allow scientific research to continue.
• There is an educational challenge for healthcare professionals – most do not know how to handle genetic information. The value for individuals seeking to understand their personal genetic code will depend on their ability to share and discuss it with their healthcare providers.
• Whether people should seek to understand their personal genetic code is still debatable. Some people do not want to know about incurable issues, while others want to know everything because they want to become advocates for their family.
• The therapeutic value of genetic data is still questionable. Much more research is required to better understand the correlations between certain genes and diseases. The likely course will be similar to how cholesterol information is analysed with regard to heart disease. Specifically, “risk factor analysis” will be based on how genetic data is used rather than through a deterministic approach.
• The future of the Genome Era depends on the willingness of large groups of individuals to share their genetic information for researchers to organize, analyse and determine variations and correlations among the population at large.
J. Craig Venter
Founder and President, J. Craig Venter Institute, USA
PhD. Founder and Chief Executive Officer, Synthetic Genomics, a privately-held company seeking to co...
Francis S. Collins
Director, National Institutes of Health, USA
BSc, University of Virginia; PhD, Physical Chemistry, Yale; MD, University of North Carolina. Former...
- Linda Avey