The Impact of Next Generation Sequencing on Society, Policy and Law

December 1, 2009 · Posted in ELSI, HUGO Events · Comment

by Dr. Benjamin Capps, Centre for Biomedical Ethics, National University of Singapore.

Listening to the discussions at the 2009 HUGO Symposium on Genomics and Ethics, Law and Society, held in the City of Geneva, I was drawn to the writings of Jean-Jacques Rousseau, born in Geneva in 1712. In particular, one paragraph of the Discourse on Inequality (1754) came to mind:

The first man who, having fenced in a piece of land, said "This is mine," and found people naive enough to believe him, that man was the true founder of civil society. From how many crimes, wars, and murders, from how many horrors and misfortunes might not any one have saved mankind, by pulling up the stakes, or filling up the ditch, and crying to his fellows: ‘Beware of listening to this impostor; you are undone if you once forget that the fruits of the earth belong to us all, and the earth itself to nobody.‘

Rousseau could not possibly have known that his ideas would have resonance in the debates on genetic ownership, privacy, and exploitation. As biotech companies trawl isolated regions of the world for their biodiversity, sheltered, until now, by situation and circumstance from the melting pot of migration, international organisations have tried to cultivate a sense of awe in a collective global cultural heritage, while simultaneously asserting on behalf of these communities their rights to be compensated. But now, every individual has an opportunity to demark their uniqueness – to own their genetic sequence – as part of what Linda Avey calls ‘democratising DNA’.

Personalised medicine promises to be a defining advance in allowing drugs to be prescribed effectively and safely. But there were also some words of caution at the Symposium. It should not be forgotten that uncovering our uniqueness brings with it certain risks; most notably ‘bioinformational creep’, a process whereby uncensored access to an individual’s genetic sequence is routinely justified in ‘the public interests’. Moreover, genetic polymorphisms do not always result in expected phenotypes, as was demonstrated by the discovery that James Watson’s genome revealed that he had two normally debilitating, but clearly unexpressed, monogenetic disorders.

Some participants at the HUGO Symposium raised these issues as important concerns for sequencing standards and premature use of sequence data to make future health projections – particularly when made available to the public through commercial enterprises. One may also question where the responsibility for the access and use of this information lies – do these companies have any enduring role to their clients’ wellbeing, particularly subsequent to the delivery of the test results; and who are they bound to divulge, or withhold, this information from? Is it merely paternalistic to raise these concerns, or is it a clear warning that vital individual interests are at risk? Answering these issues will be a task taken forward by the HUGO Ethics Committee over the coming year.

Genomics Law Report Special Series on Ethical, Legal, or Social Issues in Genomics and Personalized Medicine

October 20, 2009 · Posted in ELSI · Comment

One of our aims at HUGO Matters is to point readers to important discussions both online and offline. Just in time for the HUGO Symposium on Genomics and Ethics, Law and Society next month in Geneva, Genomics Law Report is running a special series, What ELSI is new?, with invited commentaries from industry, academic and thought leaders in the fields of genomics and personalized medicine.