Sharing Health Information

texlex joined as a data participant.

ktpickard updated the stage of this study to be "In Analysis."

ktpickard Thank you for participating in the Sharing Health Information survey. We achieved our goal and have over 100 respondents. The survey is now "In Analysis." I will post a link to the results when they are available.

shahin joined as a data participant.

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jacinto joined as a discussion participant.

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ktpickard Thanks to all for the February push--we now have 90+ responses. The study will change to "In Analysis" in a week or two. If you haven't yet, it's your last chance to complete the survey: http://bit.ly/sharing-health-info-survey

TroySadkowsky joined as a data participant.

ktpickard We have 75 responses to the survey, and would like to have 100 responses by the end of February. As a favor, could you please ask a friend or family member to complete the Sharing Health Information Survey? To let others know, please Tweet or forward this link: http://bit.ly/genomera-sharing-health If you are just getting started, click the "Sign Up" link in the upper right corner of the study page to create an account. Thank you again to all who have responded.

erinep joined as a data participant.

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ktpickard Many thanks to those who have recently completed the Sharing Health Information survey. To let others know about it, please Tweet or forward this link: http://bit.ly/genomera-sharing-health If you are just getting started, click the "Sign Up" link in the upper right corner of the study page to create an account.

rencfa joined as a data participant.

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Something that your survey didn't touch on, but which concerns me a bit, is what happens to my data after it's collected? For example I'd like to know where copies of my data live (specific companies, organizations, agencies). What notifications will I receive about who will see my data? What protections do I have against being deanonymized? Will I have the power to withdraw my data from the original collection source and from all derived data sets? Are all those researchers and organizations who use my data as bound to my privacy obligations as the original source of my data? What equity do the pool of data contributors have in resulting inventions and discoveries? What Financial or legal liability do the data collectors and those who use my data have in the event of deanonymity?

posted by evanwolf

evanwolf Oh and where is the legal nexus for this contribution of my very personal data? Is it the locale of where I live, where the institution is based, where the laboratory that sequences my genome is located, where the data center(s) holding my data operate?

ktpickard Hi @evanwolf - Thank you for your questions. Regarding this survey, many of your questions are answered in the informed consent form: http://bit.ly/sharing-health-info-consent Each response is recorded anonymously and cannot be removed from the survey results. Please keep in mind that your participation in this study is voluntary. That said, I do hope that you will participate! http://bit.ly/sharing-health-info-survey Cheers, -- Thomas