I want to contribute to research, not subscribe to genetic information

What do researchers owe participants in biobank research?

One answer is that researchers should share relevant incidental findings about participants with these helpful individuals. Returning such information could support a sense of partnership and acknowledge participants’ extremely valuable contribution to research.

I’m doubtful about this answer, however. I’m inclined to think that return of information might estrange participants from the research to which they want to contribute.

Certainly, if researchers discover a tumor but don’t identify and contact the participant, that would be problematic. But incidental findings in biobank research typically concern difficult to interpret genetic risk factors. Should these elusive figures be communicated to participants?

Samples may moreover be reused many times in different biobank projects. A relevant incidental finding about me may not be made until a decade after I gave the sample. By then I may have forgotten that I gave it.

Do I want to be seen as a biobank partner that long after I gave the sample? Do I want my contribution to research to be acknowledged years afterwards in the form of percentages concerning increased disease risks? Wasn’t it sufficient with the attention and the health information that I received when I gave the sample: when I actually MADE my contribution?

Personally, I’m willing to contribute to research by giving blood samples, answering questions, and undergoing health examinations. But if that means also getting a lifelong subscription to genetic information about me, I’m beginning to hesitate.

That’s not what I wanted, when I wanted to contribute to research.

Realizing that my blood sample rendered a lifelong subscription to genetic information would estrange me from what I thought I was doing. Can’t one simply contribute to research?

But other participants might want the information. Should biobank research then offer them subscription services?

Pär Segerdahl

We like challenging questions - the ethics blog

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