tag:blogger.com,1999:blog-36762711.post1919660032567461298..comments2023-11-03T06:14:58.449-04:00Comments on Drug and Device Law: The Ethics Of Genetic ResearchRachel B. Weilhttp://www.blogger.com/profile/02251124525069607080noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-36762711.post-17596518094398999952009-01-29T18:13:00.000-05:002009-01-29T18:13:00.000-05:00Interesting post. An excerpt from my posts over t...Interesting post. An excerpt from my posts over the past few years regarding academia and genome studies (links are below):<BR/><BR/><I>Should academia alone be entrusted to collection and stewardship of indigenous populations’ genomic data and of the inventions discovered as a result of such possession?<BR/><BR/>Academics, especially those with tenure, are less accountable than even industry and governmental officials (as, for example, FDA’s and Merck’s trials and tribulations illustrate). Of all people, genome information is perhaps least safe in the hands of academics. A significant portion the public in the U.S., let alone indigenous people, is not entirely trusting of the potential for misuse of clinical and genetic data. At least in profit-driven industry those in possession of the data face the threat of litigation and financial ruin for misuse of such data.<BR/><BR/>Academia itself lacks a pristine reputation on handling of intellectual property matters. For example, several years ago bitter authorship disputes were found to be increasingly frequent by the Ombud of Harvard Medical School and felt to affect other academic institutions as well. Even worse, the Harvard Ombud wrote that “it is unreasonable for institutions to promise that they can protect individuals from retaliation for coming forward to complain through formal grievance procedures.” In my response in JAMA I indicated alarm at the latter opinion. If universities admittedly cannot protect their own, I ask, how can they possibly protect their research subjects’ interests when disputes arise?<BR/><BR/>... Does Ivy-League academia intrinsically respect the notion of individual or collective intellectual or genetic-information property? The Free software movement began in the "hacker" culture of U.S. computer science laboratories (Stanford, Berkeley, Carnegie Mellon) and is an academic concept designed to block corporations from capitalizing on the advantages of intellectual property ownership. This movement considers free software a matter of “liberty” as in "free speech".While trying to deny Bill Gates and Microsoft the benefits of intellectual property protection may not seem like a bad idea to some, and while free software such as the Linux operating system has enabled a lot of useful research, disrespect towards the property rights of indigenous populations via such widespread academic ideologies would be, quite frankly, a risk of a renewed Genome project under any name. It would be an atrocity if harm actually occurred.<BR/><BR/>... Has it ever been possible to hold academia accountable for anything in front of any authority? Some in academia make the most outlandish of statements or engage in questionable activities and rights abuses, often without significant loss of career or income. </I><BR/><BR/>Also see:<BR/><BR/>Informed consent, exploitation and "Developing a SNP panel for forensic identification of individuals" at:<BR/><BR/>http://hcrenewal.blogspot.com/2007/07/informed-consent-and-developing-snp.html<BR/><BR/>and<BR/><BR/>New book: Analysis of the Commodification & Ownership of Life at:<BR/><BR/>http://hcrenewal.blogspot.com/2007/04/new-book-analysis-of-commodification.html<BR/><BR/>and<BR/><BR/>Academic abuses in biomedicine vs. Indigenous Peoples: The Genographic Project at:<BR/><BR/>http://hcrenewal.blogspot.com/2005/09/academic-abuses-in-biomedicine-vs.htmlInformaticsMDhttps://www.blogger.com/profile/03994321680366572701noreply@blogger.comtag:blogger.com,1999:blog-36762711.post-28928979734974158592009-01-27T16:03:00.000-05:002009-01-27T16:03:00.000-05:00That is an interesting issue, and I thought some a...That is an interesting issue, and I thought some about that. One of the problems would, of course, be that your sample would only consist of those whose DNA could be obtained by such collection methods, and the information obtained would be pretty random. I doubt any journal would publish results based on data so collected. If it were published, it would certainly be attacked.Unknownhttps://www.blogger.com/profile/01093094433753291419noreply@blogger.comtag:blogger.com,1999:blog-36762711.post-4692989876084698032009-01-27T13:06:00.000-05:002009-01-27T13:06:00.000-05:00Okay, I can see serious ethical issues where a con...Okay, I can see serious ethical issues where a contract exists between the researcher and involved people. I have in fact crossed out clauses from medical care waiver forms and had my altrations accepted.<BR/><BR/>What I think would be a more interesting case, genetic material collected without knowledge or consent. Given that there is apparently nothing wrong with collecting things like tissue and other discarded items, what sorts of ethical issues would be raised by a university collecting the trash from the reception area and performing this same sort of analysis? (Other than an obvious problem of not being able to link a particular sample to particular person.) That problem might not even be a problem where your research is into group origin of a reasonably small community.Soronel Haetirhttps://www.blogger.com/profile/11639906179427371695noreply@blogger.com