Difference between revisions of "Open Source Cadavers"
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===Institute lawyers=== | ===Institute lawyers=== | ||
− | ==Other approaches== | + | ==Other approaches/notes from talks with folk== |
− | + | === with 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. | :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. | :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. | :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. | ||
+ | |||
+ | Publish a report, give that back to the person. “I release this to public domain” | ||
+ | Proxies for data, materials, etc. - family member. | ||
+ | |||
+ | “Don’t want to wait to share your biological data? Check out the Personal Genome Project!” | ||
+ | |||
+ | PGP participants, if there are enough of them, going to an orga about it. | ||
+ | |||
+ | edx for harvard, link to medical/disection team. HMS might be more comfortable knowing they’re already in PGP. Make sure generally licensed. Not necessarily useful to them, more likely a burden. | ||
+ | |||
+ | neurology studies | ||
+ | |||
+ | ===with an anesthesiologist=== | ||
+ | Weeks of dissection | ||
+ | |||
+ | Getting used to taking a knife to a living person. | ||
+ | |||
+ | Understanding the layout of body, tacitly | ||
+ | |||
+ | Feel for different tissues | ||
+ | |||
+ | At the end of the dissection, the body is a mess. Might start to decompose by the end of class. | ||
+ | |||
+ | Also research. | ||
+ | |||
+ | Someone in anesthesia going in, practicing nerve blocks, new approaches to nerve blocks. might not be fully documented until it’s also applied to live people, say it does work. | ||
+ | |||
+ | When we do nerve block at this point in your leg, where does it spread? Does tissue obstruct? Discrete research things. This would be the most amenable to an open access thing, but harder. Restricted to a portion of the body. | ||
+ | |||
+ | Most of the places in Pennsylvania have a central source that arranges the distribution. Looking into who in the medical center would be receiving the body, what their disposition is. |
Latest revision as of 09:41, 12 December 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.”
Contents
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/notes from talks with folk
with 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.
Publish a report, give that back to the person. “I release this to public domain” Proxies for data, materials, etc. - family member.
“Don’t want to wait to share your biological data? Check out the Personal Genome Project!”
PGP participants, if there are enough of them, going to an orga about it.
edx for harvard, link to medical/disection team. HMS might be more comfortable knowing they’re already in PGP. Make sure generally licensed. Not necessarily useful to them, more likely a burden.
neurology studies
with an anesthesiologist
Weeks of dissection
Getting used to taking a knife to a living person.
Understanding the layout of body, tacitly
Feel for different tissues
At the end of the dissection, the body is a mess. Might start to decompose by the end of class.
Also research.
Someone in anesthesia going in, practicing nerve blocks, new approaches to nerve blocks. might not be fully documented until it’s also applied to live people, say it does work.
When we do nerve block at this point in your leg, where does it spread? Does tissue obstruct? Discrete research things. This would be the most amenable to an open access thing, but harder. Restricted to a portion of the body.
Most of the places in Pennsylvania have a central source that arranges the distribution. Looking into who in the medical center would be receiving the body, what their disposition is.