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Suppose that you are afforded an opportunity to examine data that was, on the surface at least, collected legally and ethically, but that may contain hidden ethical dilemmas. What precautions, if any, should you take when working with this data?

Two examples that came to mind for me were data collected from a social media site and DNA/genetic data obtained by a genomics company that is supposed to trace your genetic ancestry. These data sources are covered by a consent waiver that gives the service provider certain permissions to use, distribute, and monetize your data. To use those services, a patron is required to sign a waiver/terms of use agreement. A person's data is only collected with their "consent," albeit at times a blind consent.

If I was a geneticist, suppose, and obtained via appropriate means genetic data for a population of interest that had submitted their saliva/DNA to one of these genomics companies, what would be some ethical issues I would need to consider? The subject consented to giving their data, but many times did not necessarily give informed consent. In this example, could it still be unethical to do research on data that was likely obtained from people who just quickly passed through the consent agreements and signed blindly?

This issue is even more relevant in cases of social media data. Most users likely had no idea their data was even being collected because the did not read the user agreement they consented to. Would it be unethical to then use data collected from this social media site, even though it was legally obtained?

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    Interesting question! I think it'd be appropriate to obtain IRB approval before using such data - even if it has been anonymized to some extent - and many IRB policies do require informed consent. – Anyon Aug 21 '18 at 22:10
  • My naive sense is that it would depend, strongly, on what you intend to do with it and whether that is in line with the reason it was collected in the first place. In particular, do you intend to use it as is fully anonymized, or do you (near the other end of the scale) intend to correlate it with other data, making anonymous usage impossible? Perhaps you need advice for the specific case from an ethicist, not just an IRB. – Buffy Aug 21 '18 at 22:43
  • This is an interesting question, but I’m unsure if it’s on topic because it seems like more of a discussion prompt than a question with a particular answer. – Stella Biderman Aug 21 '18 at 23:15
  • It's unlikely that your institutional IRB would give prior approval to the genetic research (or even the social network research) because of the lack of informed consent. Starting to do the research without IRB approval would make things much worse. – Brian Borchers Aug 22 '18 at 1:42
  • This may prove interesting : thelancet.com/journals/lancet/article/PIIS0140-6736(04)17619-8/… and this one : jewishvirtuallibrary.org/… – Solar Mike Aug 22 '18 at 9:16
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Suppose that you are afforded an opportunity to examine data that was, on the surface at least, collected legally and ethically, but that may contain hidden ethical dilemmas. What precautions, if any, should you take when working with this data?

There is no simple way to answer this kind of general question, but thankfully most institutions in the academic world are equipped with ethics committees whose job is exactly to answer such questions. They provide general guidelines and can be asked specific questions, their role is to guide researchers through potentially difficult questions and to set the boundaries. Depending on the specifics of your case, they might for instance ask you to take additional steps to protect individuals privacy, or even tell you that the study that you are considering is not ethically acceptable. Their expertise gives you legal and moral clarity in an area where you are not the expert.

On a related note, in large research projects it is usually a requirement to plan for this kind of ethics expertise and oversight.

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