Common heritage

Excerpts from a statement on benefit-sharing from the HUGO Ethics Committee:

The HUGO Ethics Committee subscribes to the following four principles presented in the HUGO Statement on the Principled Conduct of Genetic Research (1996):

* Recognition that the human genome is part of the common heritage of humanity;

* Adherence to international norms of human rights;

* Respect for the values, traditions, culture, and integrity of participants; and

* Acceptance and upholding of human dignity and freedom.

The Committee believes that the issue of benefit-sharing merits further discussion because expenditures incurred by private industry on genetic research now exceed the contributions of governments.

Many new products, including vaccines and drugs for common diseases, are now based on genetic research. Much government or non-profit research will eventually be commercialised. Companies involved in human health may have special moral obligations.

The following is the Recommendation of the HUGO Ethics Committee:

Whereas- we all share a common genetic heritage, and

- there are different definitions of community, and

- communities may have different beliefs about what constitutes a benefit, and

- genetic research should foster health for all human beings,

The HUGO Ethics Committee finally recommended:

1) that all humanity share in, and have access to, the benefits of genetic research;

2) that benefits not be limited to those individuals who participated in such research;

3) that there be prior discussion with groups or communities on the issue of benefit-sharing;

4) that even in the absence of profits, immediate health benefits as determined by community needs could be provided;

5) that at a minimum, all research participants should receive information about general research outcomes and an indication of appreciation;

6) that profit-making entities dedicate a percentage (for example, 1-3 per cent) of their annual net profit to healthcare infrastructure and/or to humanitarian efforts.