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Return of results in research?
sinnweja
Posted: Tuesday, March 31, 2015 10:22 AM
Joined: 3/31/2015
Posts: 4


I learned recently that new ways are being worked out to give research results back to patients involved in genetic studies and clinical trials. Anyone have any experience with that in studies their loved ones are in?
I'm wondering if we should bank our family's DNA and see if researchers can come to us to use with our permission, and return results.

Thoughts?

sinnweja
Posted: Wednesday, April 1, 2015 7:42 AM
Joined: 3/31/2015
Posts: 4


Recently found this:

http://www.genome.gov/27559024#_Return_of_results

And this:

http://bioethics.gov/node/3183

On this topic.

Lane Simonian
Posted: Friday, April 3, 2015 9:35 AM
Joined: 12/12/2011
Posts: 4863


Thank you for posting these, sinnweja. It is a very important, evolving topic.
sinnweja
Posted: Friday, April 3, 2015 3:35 PM
Joined: 3/31/2015
Posts: 4


Thanks Lane. It seems that many people are involved in clinical trials for better treatment, and I know some people on studies to help find disease-causing genes. I'm wondering if more people would get involved if they had an incentive to be part of a study. I think studies would have more information if families had samples saved on more members before it is too late.

I'd like to hear why you think it is an important topic. I sort of work in research, and I also have parents on research studies, so it is personal for me.

Lane Simonian
Posted: Friday, April 3, 2015 5:27 PM
Joined: 12/12/2011
Posts: 4863


For me it is a patient's rights issue. A patient and in some cases their family should have the right to know individual results if they so choose. A person invests considerable time and effort in a clinical trial and often learns nothing or next to nothing about the results. Knowing something about the results could allow them to make better decisions about the future. Of course, if it encourages more people to participate in important research efforts that would be a bonus.

I also think it is important to know about adverse effects that occur within clinical trials. Some pharmaceutical companies are not completely open about this.

Knowing is not always better than not knowing, but usually it is.