The 'thousand-dollar genome': an ethical exploration

Sequencing an individual’s complete genome is expected to be possible for a relatively low sum (‘one thousand dollars’) within a few years. Sequencing is determining the order of base pairs that make up the genome. The result is a library of three billion letter combinations. Cheap whole genome sequencing is of greatest importance to medical scientific research. Comparing individual complete genomes will lead to a better understanding of the contribution genetic variation makes to health and disease. As knowledge increases, the ‘thousand-dollar genome’ will also become increasingly important to healthcare. The applications that come within reach raise a number of ethical questions. This monitoring report addresses the issue.

Committee

• Prof. L.J. Gunning-Schepers, President of the Health Council of the Netherlands, The Hague, chair
• Prof. J.K.M. Gevers, Professor emeritus of health law, Academic Medical Centre, University of Amsterdam, vice chair
• A.C. de Die, lawyer, Pels Rijcken & Droogleever Fortuijn advocaten en notarissen N.V., The Hague
• Prof. J.C.J. Dute, Professor of health law, University of Amsterdam
• P.G. Engels. Ministry of Health, Welfare and Sports, observer
• Prof. R.P.T.M. Grol, Professor of quality promotion and control in general practice, St Radboud University Medical Centre, Nijmegen
• Prof. G.R.J. de Groot, Professor of social health care insurance law, VU University, Amsterdam
• Prof. G.A. den Hartogh, Professor of ethics, University of Amsterdam
• Prof. A.C. Hendriks, Professor of health law, Leiden University/health lawyer, Equal Treatment Commission, Utrecht
• Prof. H. Jochemsen, Professor of Christian reformed philosophy, Wageningen University, Wageningen
• Dr W.L.M. Kramer, paediatric surgeon/paediatric traumatologist, Wilhelmina Children’s Hospital, University Medical Centre, Utrecht
• Prof. F.E. van Leeuwen, Professor of epidemiology, Netherlands Cancer Institute, Amsterdam
• Prof. J. Legemaate, Professor of health law, Academic Medical Centre, University of Amsterdam
• Dr G.C.M.L. Page-Christiaens, gynaecologist, University Medical Centre Utrecht
• Prof. MA Verkerk, Professor of medical ethics, University Medical Centre Groningen
• Prof. G.M.W.R. de Wert, Professor of biomedical ethics, Maastricht University
• A. Wijbenga, executive director of the Health Council of the Netherlands, The Hague, advisor
• Prof. D.L. Willems, Professor of medical ethics, Academic Medical Centre, University of Amsterdam
• Dr C.J. van de Klippe, Health Council of the Netherlands, The Hague, secretary
• Dr H.W.J.M. Wijsbek, Health Council of the Netherlands, The Hague, secretary