The 1000-euro genome
Governance of preventive genomics
It is becoming less expensive every day to establish a person’s entire genome. While the completion of the first human genome cost around ten million euros back in 2002, expectations are that the price will soon have declined to below the thousand-euro mark. This will place the definition of someone’s entire DNA sequence as not only feasible in a clinical setting, but also within the context of population or genetic screening. Consider, for example, the PKU test performed on newborn babies in the Netherlands.
Not only would this raise entirely new issues, it would also demand taking a fresh look at generally accepted answers to ethical questions. Would this not also make the distinction between diagnosis and screening rather a rather murky area? Would it be permissible to include the entire genome in the analysis, or would certain sections have to be shielded using filters? How should one approach the matter of screening for untreatable diseases such as Alzheimer’s? And will it be possible to retain the classic informed consent requirement: Will laypeople still be capable of making a carefully considered decision in the case of such complex tests? What about the right not to know? And what will be the implications for responsible parenthood if it becomes possible to establish one’s entire genome simultaneously to the PKU test, or even prenatally?
The researchers are to seek to address these issues by means of interviews and focus groups comprising care providers, researchers and parents. The analysis of the projects findings should yield recommendations on what is advisable in terms of guidelines.
Start project: 2010