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Old 06-04-2013, 04:58 AM   #1
heartbeatsalute
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Default Who Owns Your Body?

http://www.whoownsyourbody.org/

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Who Owns Your Body?
Not you--at least not anymore

Someone has rights to your DNA


Show Your Support for H.R. 977 - The Genomic Research and Accessibility Act

Representative Xavier Becerra (CA-31), Assistant to the Speaker and the only congressional member from Southern California on the House Committee on Ways and Means, have introduced the Genomic Research and Accessibility Act, a bill that once enacted, would put an immediate end to the practice of patenting any and all portions of the human genome. Rep. Dave Weldon, M.D. (FL-15) joined Rep. Becerra as the co-author of the legislation.

Write Your Congressman






The Institute for Science, Law & Technology (ISLAT), at the Illinois Institute of Technology, studies the implications of emerging science in its social and legal contexts. The Institute sponsors long-term, multi-disciplinary research, public conferences, judicial training, symposia for journalists, student education, and other programs. The Institute focuses on biotechnology, information technology, environmental science, and cross-cutting issues such as products liability, intellectual property, design of legal and market institutions, and use of technology in the courtroom. In addition, ISLAT faculty and staff draft laws and regulations that guide public policy decisions.

No aspect of our lives remains untouched by technology - from the way children are created to the way people die, from the way we communicate to the way we learn and work. As a society, we have come to rely on technology to meet consumer preferences, to promote economic growth, and to address social problems such as improving human health and conserving the environment. The weight social and policy-making institutions place on scientific proof has changed how we conduct business and how we develop policy. Yet, along with their vast potential for improving our lives, emerging technologies may create scientific challenges for risk assessment and may have initially unrecognized impacts on cultural values and social concepts.

ISLAT sees technology with a human face. The promises of technology, and the consequences of technology, all shape a human story. Since its inception, ISLAT has employed interdisciplinary analyses to assess technologies in ways that maximize the benefits and minimize the risks. ISLAT has been called upon to advise the Food and Drug Administration, the Centers for Disease Control, the Social Security Administration, the Department of Labor, and foreign governments on genetics issues, privacy, and the ethical considerations of technology. ISLAT has undertaken pro bono litigation cases, including filing amicus briefs with the U.S. Supreme Court.

ISLAT brings together cross-disciplinary laboratory research, clinical practice, graduate-level education teams, and legal and policy scholars who represent government, academia, and industry. The combined expertise spans basic scientific research, development, testing, implementation and assessment of technology, and regulation.
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Last edited by heartbeatsalute; 06-04-2013 at 07:05 AM.
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Old 06-04-2013, 05:48 AM   #2
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Yes Michael Crichtons last book called next was about this stuff. Basically company's patent genes and then they own them so if you have these genes they have the legal right to basically kidnap you and take their property, unreal. Its a fiction book but lots of truth in it too, the blurb says "This novel is fiction, except for the parts that aren't." worth checking out
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Old 06-04-2013, 06:11 AM   #3
heartbeatsalute
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Quote:
Originally Posted by dmt head View Post
Yes Michael Crichtons last book called next was about this stuff. Basically company's patent genes and then they own them so if you have these genes they have the legal right to basically kidnap you and take their property, unreal. Its a fiction book but lots of truth in it too, the blurb says "This novel is fiction, except for the parts that aren't." worth checking out Next (novel) - Wikipedia, the free encyclopedia

Thanks dmt head, will look into that.

Here is some more:


RESEARCH WITHOUT PATIENT CONSENT

Can scientists do genetic research on your tissues without your consent? That's the essential question in a lawsuit pending before Judge Janet E. Barton of the Maricopa County Superior Court in Arizona. Members of the Havasupai Tribe allege that researchers from Arizona State University (ASU) and the University of Arizona (U of A) collected 400 blood samples from tribal members for diabetes research, but that those same samples were used for additional unauthorized research on schizophrenia, inbreeding, and population migration. The tribe asserts that research on schizophrenia and inbreeding sitgmatizes them and that they would not have authorized any migration research because it conflicts with their religious origin story.

The 650 members of the Havasupai Tribe are descendents of the Hohokam Indians, who migrated north from Mexico around 300 B.C. The Havasupai settled in an isolated and remote location in the Grand Canyon, which is still only accessible by horseback, foot, or helicopter. Such isolation is the reason that the Havasupai Tribe posses a restricted gene pool, in which certain genetic diseases are at higher incidence than in, say, a general urban population. In fact, the Havasupai have one of the highest incidences of type-2 diabetes anywhere in the world. In 1991, 55% of Havasupai women and 38% of Havasupai men were diabetic.

In 1989, two tribe members approached an ASU faculty member, asking for help to stem the tribe's high incidence of diabetes. They allege that researcher Therese Markow and a colleague originally presented their project to the tribal council as consisting of three elements: (1) "diabetes education," (2) "collecting and testing blood samples from individual members to identify diabetics or persons susceptible to diabetes," and (3) "genetic testing to identify an association between certain gene variants and diabetes among Havasupai people."

They allege that Markow did not inform them that she was in the process of, or had previously submitted, a grant application to study schizophrenia among the Havasupai. Nor were they subsequently told that Markow caused her assistant to surreptitiously examine their medical charts for schizophrenia after operating hours of the local health clinic. The complaint alleges that the defendants authored 15 publications dealing with schizophrenia, inbreeding, and theories about ancient human population migrations from Asia to North America - secondary uses of the samples to which the Havasupai would not have consented.

The faculty member who introduced Markow to the Havasupai complained to ASU officials that the research had strayed away from diabetes research. Given that ASU was about to launch an ambitious plan to accelerate genetic research, ASU desired to keep the conflict private and paid for an investigation conducted by attorney Stephan Hart. The investigation resulted in a nine-volume report. An article in Nature states that Hart's report provided "no firm findings of misconduct, but states that there are 'issues' on how the project was administered, the keeping of records, and whether the tribe realized the full extent of research that would be undertaken."

The complaint in the federal court case listed six causes of action: (1) breach of fiduciary duty and lack of informed consent (including not having appropriate procedures for vulnerable subjects such as children, people with mental illness, and people whose main language was the tribal language); (2) fraud and misrepresentation/fraudulent concealment; (3) intentional or negligent infliction of emotional distress; (4) conversion; (5) violation of civil rights; and (6) negligence, gross negligence and negligence per se.

On a motion to dismiss the case, the federal district court dismissed three of the six causes of action - lack of informed consent and breach of fiduciary duty claims as well as the fraud and misrepresentation/fraudulent concealment and conversion claims. The judge determined that the members of the tribe had consented to the research, even if the researchers had made fraudulent representations about the true nature of the studies to induce them to give consent. He also found that there was no fiduciary relationship between the parties, even if the members of the tribe trusted the researchers, because the researchers claimed to not accept the trust that had been placed in them.

The judge allowed the plaintiffs to continue their case with their claims for the infliction of emotional distress, violation of civil rights, and negligence. The plaintiffs then voluntarily dismissed their federal civil rights claim, stripping the federal court of jurisdiction to hear the case, and the court sent the case back to the Arizona state court.

Upon remand, two cases - one for the tribe itself, and one for individual members of the tribe - were consolidated into a single case against the Arizona Board of Regents (for ASU and U of A), Markow, and members of Markow's research team. The claims from the plaintiffs' Second Amended Complaint are currently pending in Maricopa County Superior Court. The plaintiffs claim four causes of action: (1) breach of confidential or fiduciary duty (including lack of informed consent); (2) fraud and misrepresentation/fraudulent concealment; (3) negligence, gross negligence, negligence per se; and (4) trespass (with respect to the blood samples and entry onto tribal lands).

In defense of Markow, Nature reports that research into interbreeding and migration patterns is "an accepted procedure" for researching the extent to which the studied population is isolated. According to Nature, information on the extent to which a studied population is isolated is "important" for the genetic investigation of a disease. However, most research to identify human disease genes has proceeded without inbreeding studies, and Nature fails to explain how schizophrenia is linked to diabetes research. Moreover, even if such studies were standard procedure, the Havasupai argue that they should have been told of these "accepted procedures" before they were asked whether they were willing to consent to the research.

On the website about her lab, Markow (now a Regents Professor of Ecology and Evolutionary Biology at the U of A) reports that her work uses Drosophila to research speciation, mating system evolution, ecology and population biology, and biological stoichiometry. There is no mention of research on human subjects, despite the fact that she has published articles about the Havasupai, including an article on inbreeding.

Perhaps her fruit flies didn't care which studies she undertook, but her human research subjects certainly did. The pending lawsuit will determine whether certain acceptable practices for animal research require a higher level of ethics when applied to the human realm.


Related Articles

Paul Rubin, "Indian Givers," Phoenix New Times, May 27, 2004.

Rex Dalton, "When Two Tribes Go to War," 430 Nature 500, 500-02, July 29, 2004.

Nature (editorial), "Tribal Culture Versus Genetics," 430 Nature, 489, July 29, 2004.

Order in Tilousi v. Arizona State University, No. 04-CV-1290 (D. Ariz. March 3, 2005)
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