Case 9 - Conflicting Interests in Families and Groups in Genomic Information

Summary

A.1. BASE CASE

The Miller family carries a unique gene that is somehow linked to the development of intelligence. 80% of the family enjoys an IQ of 140. The downside of the gene is shortgevity. Those carrying the gene live no longer than 42 years. Lilly, a carrier of the gene, agreed with a pharmaceutical company Genfix to undertake extended experiments on the gene. As compensation, she was promised a 1% share in all product sales made on the basis of the respective gene. Her brother William, who carries the same gene, objects. Does William have the right to veto the whole contract? Does he have the right to veto the payment of 1%?

A.2. COUNTRY REPORTS

(1) BELGIUM

I. Operative Rules

No, William probably has no enforceable right to veto the contract, although he might be able to veto the payment.

II. Descriptive Formants

The informed consent requirement for research has to be respected (see Case 7). The individual consent of Lilly Miller fulfils this requirement. However, the issue becomes somewhat more complex when groups are involved. In this regard, it is recommended by legal doctrine and international declarations that some sort of consulting, informing and consent of the concerned group be sought. The fact that the family should be informed and consulted does not mean, however, that Lilly’s individual consent would be invalid. She obviously has the right to donate her tissue in the hope that research on her shortgevity condition could progress.

With regard to profit-sharing, there is a problem, however. First, it is said to be a generally accepted principle that one cannot individually benefit on the grounds of having donated tissue (although modest compensation for time and expenses is allowed). On the other hand, it is suggested that if biomedical research is successful thanks to certain characteristics specific to ‘groups’, a certain amount of benefit-sharing is acceptable.