Difference between revisions of "Open Source Cadavers"

Revision as of 06:53, 22 October 2014

So this kind of freaks some people out, huh?

Need language for the lawyers, for the cadaver receivers, for the head of the research lab.

Need language for IRBs. Might require local IRB. If it’s a multi-site study, might require multiple IRBs.

There would need to be a way to know they were dealing with an OSC. Orga working on this, with their IRB would include language around “if dealing with an OSC, X Y Z need to be considered.”

Finding more accepting institutions

Using this template contact places to see how amicable they are to Open Access of medical research, and to edx-style recording of medical practice in regards to the cadaver bequeathed to them. The full list of cadaver-using medical organizations in the US can be found here, with the overview of willingness to work with the open access obligation here. Please contribute additional country listings. Because it is vital that the accepting organization get the cadaver within a very short timeline, geographic proximity is a priority.

People who can especially help with this

Open access enthusiasts in the following roles, or with connections to those in these roles, are especially well positioned to push this agenda.

Heads of cadaver labs

Institutional Review Board members

Institute lawyers

Other approaches

from conversations with the lovely folk at Personal Genome Project

Actually, in theory, it should almost be trivial since it is not human subjects research. I think it might be simpler to create a new study that gets and IRB waiver to sequence tissue from deceased individuals, return the results to the family members who have consented, and allow them a mechanism for donation of the data to the PGP or Open Humans databases. For our own protection, we might want a trail of legal consent by next of kin, etc. Also, although not a legal requirement, from an ethical perspective, I think it would be important for the family who is donating the sample to be educated about the risks of the PGP and the implications for genetically-related individuals.

Yeah. The sticky point might be the logistics of finding resources for utility-extraction of a person's body.

I'm sure we can improve on the current design for handling death, and use that for Open Humans too. Maybe we could make the "designated proxies" a ranked list with more well-defined behavior (e.g. first available person is the decider), and get better about encouraging people to fill it in.