audio/video/text: Topol on The Creative Destruction of Medicine (technology/social networks/patients sharing data/Patients Like Me, young patients, privacy ...)

(Dr) Topol on The Creative Destruction of Medicine

eg. MS/Facebook (Canada/stents/Facebook; I use this as an example (there are others in the interview) as the social networks moved forward clinical trials for MS patients where no support existed prior.....)

open access: Future Medicine - Ethical considerations for biobanking: should individual research results be shared with relatives?

Ethical considerations for biobanking: should individual research results be shared with relatives?

The issue of returning individual research results (IRRs) is important and contentious. Indeed, Science magazine calls this, “…the most pressing issue in genetics today” [1]. At stake are several significant concerns, including public trust in, and support for, biomedical research, the wise use of limited research resources and the ethical obligations of the research community.

These concerns become even more complex and challenging with genetic biobank research. In this context, researchers must decide not only whether and how to share IRRs with donors, but also their relatives. After all, many genetic conditions have medical or personal significance for family members, and many ethical arguments for returning IRRs to donors might seem to extend to relatives as well [2].

This editorial briefly defends two important conclusions about these issues:

	▪ The case for sharing IRRs with relatives is no stronger, and almost certainly weaker, than for donors;
	▪ The case for returning IRRs to donors is not particularly convincing.

Taken together, these two claims support a strong presumption against sharing individual research findings with relatives.

Contrasting donors & relatives

The rationale for the first conclusion is straightforward. Outside of perhaps the general public itself, donors are the primary subjects to whom biobanks owe ethical consideration. Donors, not relatives, have explicitly (or, by not opting-out, implicitly) consented to their genetic materials being used by others. Donors’ interests are directly and powerfully affected by what happens in research. Their biological samples and health data reveal considerably more information about them than anyone else with whom they share partial genetic overlaps. Donors stand most fully and extensively to benefit from and/or be harmed by research. Hence, any obligations that biobanks have to donors’ relatives are weaker and narrower than to donors themselves.....cont'd

abstract: eMJA: Doctors breaching patient privacy: Orwell redux

Facebook loophole reveals names, pictures with sign-on errors | Security - CNET News

Facebook loophole reveals names, pictures with sign-on errors | Security - CNET News

HHS Proposes Stricter Patient Privacy Rules - HIPPA (U.S.)