DISQUS

Anonymous · 10 months ago

The Certificate of Confidentiality prevents *involuntary* disclosure under compulsion from the government. It does *nothing* at all to prevent the recipients of the Certificate from *voluntarily* selling data to evil pharmaceutical companies. Tuskegee was "medical research" yet they weren't compelled by the government to release data to anybody.

Andrew Yates · 10 months ago

This is congruent with the legal precedent that rights are "property". The alternative would be a reduction of personal freedoms.

Steven Murphy MD · 10 months ago

@ Anonoymous......
Funny, last time I checked, that's what people are scared of "Involuntary Disclosure" through legal stuff.....As for a NON-FOR-PROFIT, releasing data FOR PROFIT MOTIVE is not in the spirit of that company......However, DTC FOR PROFIT companies will release and have Neither HIPAA or Certificate protections......

Thus, I say....stay away from any company who can SELL your genome without your approval.....I.E. 23andMe, Decode, Navigenics, DNADynasty, et.al.

-Steve
www.thegenesherpa.blogspot.com

Cheap Holidays · 1 month ago

They allow the investigator and others who have access to research records to refuse to disclose identifying information on research participants in civil, criminal, administrative, legislative, or other proceedings, whether federal, state, or local.

Managed Hosting · 2 months ago

That absolute protection exists, yet some companies purporting to conduct medical research choose not to file it and disclaim legal confidentiality in their terms of service, seems to me like a sin of exuberance ignorance on behalf of both the companies and the participants and a precedent that I would like to see squelched soon.

FTA Files · 2 months ago

Persons so authorized to protect the privacy of such individuals may not be compelled in any Federal, State, or local civil, criminal, administrative, legislative, or other proceedings to identify such individuals.

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I think Persons so authorized to protect the privacy of such individuals may not be compelled in any Federal, State, or local civil, criminal, administrative, legislative, or other proceedings to identify such individuals.

DarcyKitchin · 1 month ago

This is a subject I will have to document more about.

DarcyKitchin · 1 month ago

Why would anyone care about the identity of people taking part in research programs? It's not a crime or a shame but a way of helping pharmaceutical companies to develop better life saving drugs. If they endanger their health in the process and they were made aware of this possibility, that is only their fault.
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Quality Leaflet Printing · 1 month ago

Certificates of Confidentiality are issued by the National Institutes of Health (NIH) and other HHS agencies to protect identifiable research information from forced or compelled disclosure.

Games · 1 month ago

This is a subject I will have to document more about.

Watch Movies Online · 1 month ago

“encroaching violations of privacy” has been the cliche “Serious Business in American Healthcare” fluff topic lately, but I have yet to see any journalist covering recent genomic advances ever mention the Public Health Service Act or why direct to consumer (DTC) genomic startups purporting to be conducting protected medical research have actually not filed for such protection.

CD Label Maker · 1 month ago

Some have asked about the legal specifications of Coriell PMC’s Certificate of Confidentially: here they are. Further, I note that despite encroaching common practices otherwise, legal protections exist for medical research to absolutely protect the privacy of participants

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I note that despite encroaching common practices otherwise, legal protections exist for medical research to absolutely protect the privacy of participants. That absolute protection exists, yet some companies purporting to conduct medical research choose not to file it and disclaim legal confidentiality in their terms of service, seems to me like a sin of exuberance ignorance on behalf of both the companies and the participants and a precedent that I would like to see squelched soon.

Sniping games · 1 month ago

The Certificate of Confidentiality prevents *involuntary* disclosure under compulsion from the government. It does *nothing* at all to prevent the recipients of the Certificate from *voluntarily* selling data to evil pharmaceutical companies. Tuskegee was "medical research" yet they weren't compelled by the government to release data to anybody.

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They allow the investigator and others who have access to research records to refuse to disclose identifying information on research participants in civil, criminal, administrative, legislative, or other proceedings, whether federal, state, or local.

Puzzle Games · 1 month ago

It's not a crime or a shame but a way of helping pharmaceutical companies to develop better life saving drugs. If they endanger their health in the process and they were made aware of this possibility, that is only their fault.

Etching Printing Press · 1 month ago

I have yet to see any journalist covering recent genomic advances ever mention the Public Health Service Act or why direct to consumer (DTC) genomic startups purporting to be conducting protected medical research have actually not filed for such protection.

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That absolute protection exists, yet some companies purporting to conduct medical research choose not to file it and disclaim legal confidentiality in their terms of service, seems to me like a sin of exuberance ignorance on behalf of both the companies and the participants and a precedent that I would like to see squelched soon.

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coolpete · 3 weeks ago

research should be kept confidential unless sure of the results . . .



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Some have asked about the legal specifications of Coriell PMC’s Certificate of Confidentially: here they are. Further, I note that despite encroaching common practices otherwise, legal protections exist for medical research to absolutely protect the privacy of participants

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medical professionals should be researching about the cure for cancers and aids . . .

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It's not a crime or a shame but a way of helping pharmaceutical companies to develop better life saving drugs.

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Yet, from top journalists to high school students, “encroaching violations of privacy” has been the cliche “Serious Business in American Healthcare” fluff topic lately, but I have yet to see any journalist covering recent genomic advances ever mention the Public Health Service Act or why direct to consumer (DTC) genomic startups purporting to be conducting protected medical research have actually not filed for such protection.

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It's not a crime or a shame but a way of helping pharmaceutical companies to develop better life saving drugs. . .

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Why would anyone care about the identity of people taking part in research programs?

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Yet, from top journalists to high school students, “encroaching violations of privacy” has been the cliche “Serious Business in American Healthcare” fluff topic lately . . .

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I note that despite encroaching common practices otherwise, legal protections exist for medical research to absolutely protect the privacy of participants.

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research should be kept confidential unless sure of the results . .