Benefit Sharing and Commercialisation
What is benefit sharing?
Generally, people are happy to participate in medical research for selfless reasons. That is, they participate for the good of all society. People are also happy to participate if they have personal reasons for doing so, such as family members who have been diagnosed with a disease.
There are laws in place that prevent people from making a profit out of trading in human tissue. This means that people cannot sell their own tissue, and researchers cannot sell it either. However, if, say, a company discovers a new medicine from research using your tissue, they are likely to make some profits from selling the medicine. Because of this, some people think that when commercial companies are involved in research the participants should be paid for the use of their samples. But this is not a popular view because of the strong feeling in society that tissue should not be bought and sold.
There are other ways that the benefits that come from this research could be shared more equally. While it is difficult to say exactly what this idea of benefit sharing means, it could include:
• the simple promise of new medicines or treatments being developed in the future;
• a promise to give research participants some sort of preferential access to these new medicines and treatments over people who have not given information or samples to researchers;
• giving participants reports about the research, which explain outcomes and other findings so that they know that their tissue is being well used for research that could lead to new medicines and treatments;
• sharing research results with the international research community so that new medicines and treatments will be developed more quickly and cheaply.
It is important that biobanks have policies about what benefit sharing is, and what information or other benefits participants in the biobank can expect to receive.