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Obituary: Jonathan Mann and Mary Lou Clements-Mann Author(s): Carol Levine Source: IRB: Ethics and Human Research, Vol. 20, No. 6 (Nov. - Dec., 1998), p. 13 Published by: The Hastings Center Stable URL: http://www.jstor.org/stable/3564415 . Accessed: 17/06/2014 06:01 Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at . http://www.jstor.org/page/info/about/policies/terms.jsp . JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact [email protected]. . The Hastings Center is collaborating with JSTOR to digitize, preserve and extend access to IRB: Ethics and Human Research. http://www.jstor.org This content downloaded from 91.229.229.203 on Tue, 17 Jun 2014 06:01:49 AM All use subject to JSTOR Terms and Conditions

Obituary: Jonathan Mann and Mary Lou Clements-Mann

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Page 1: Obituary: Jonathan Mann and Mary Lou Clements-Mann

Obituary: Jonathan Mann and Mary Lou Clements-MannAuthor(s): Carol LevineSource: IRB: Ethics and Human Research, Vol. 20, No. 6 (Nov. - Dec., 1998), p. 13Published by: The Hastings CenterStable URL: http://www.jstor.org/stable/3564415 .

Accessed: 17/06/2014 06:01

Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at .http://www.jstor.org/page/info/about/policies/terms.jsp

.JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range ofcontent in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new formsof scholarship. For more information about JSTOR, please contact [email protected].

.

The Hastings Center is collaborating with JSTOR to digitize, preserve and extend access to IRB: Ethics andHuman Research.

http://www.jstor.org

This content downloaded from 91.229.229.203 on Tue, 17 Jun 2014 06:01:49 AMAll use subject to JSTOR Terms and Conditions

Page 2: Obituary: Jonathan Mann and Mary Lou Clements-Mann

November-December 1998

er, was the openness of the dia- logue. Can anyone explain why for years federally funded research systematically excluded women from major studies, including one study concerned with the role of estrogen in heart disease? How can the black community ever have trust in human subjects research when the memory of Tuskegee and other disturbingly recent cases is still fresh? Why would a pregnant woman participate in a clinical trial involving a drug that had never before been tested on a preg- nant woman? Is it equitable to ask that someone participate in a clini- cal trial when she is uninsured and the informed consent document

provides that except for emergency treatment she is responsible for her own medical bills?

As in all bioethics conferences, there were at least as many ques- tions as answers. A strong consen- sus emerged: we must not turn back the clock. Women want to be part of the human subjects re- search process. Inclusion does not mean women are forgoing in- formed consent or that protection is eclipsed where it would be ap- propriate. It does mean that while men and women may be equal, they are not equivalent.

We know that justice requires an equitable distribution of the benefits and burdens of biomedical

research. Women as Research Subjects served as a reminder that there can be no taxation with- out representation.

Reference

1. Merton V: The exclusion of preg- nant, pregnable, and once pregnant people (a.k.a. women) from biomed- ical research. American Journal of Law and Medicine 1993; 19(4): 369- 452.

-Ruth Dreyfus

Ruth Dreyfus, JD, is an attorney prac- ticing in Connecticut and New York. She serves on IRBs at Greenwich (Conn.) Hospital and the SUNY Health Science Center and Kings County Hospital, Brooklyn, N.Y.

TlUi A R[Y

Jonathan Mann and Mary Lou Clements-Mann

T he tragic news that Jonathan Mann and Mary

Lou Clements-Mann died in the crash of Swissair 111 on 2 Septem- ber 1998 remains painfully fresh. For their families, friends, and col- leagues the loss is irreparable. Re- searchers and advocates in the fields of AIDS, vaccine develop- ment, public health, and human rights will miss the passion, experi- ence, and leadership of two extra- ordinary individuals.

Their professional accomplish- ments have been described in de- tail elsewhere. As impressive as their credentials were, they do not convey the personal characteristics that made Jonathan Mann and Mary Lou Clements-Mann leaders. Jonathan combined idealism and pragmatism. He defined AIDS as a global epidemic at a time when the disease was barely acknowledged in many countries where it had al- ready taken a heavy toll. Equally important, he linked disease pre- vention and care with human rights at a time when panic and discrimination threatened to over- whelm rational public health mea- sures. Jonathan was both an elo- quent public speaker and an as-

tute behind-the-scenes strategist. Mary Lou Clements-Mann's

passion was the development of an effective AIDS vaccine. She was an innovative scientist with impeccable attention to detail as well as the broader picture. She was a pioneer in vaccine research in the United States and worked tirelessly to develop the capacity of developing countries to organize and conduct vaccine trials. She also had a deep commitment to the well-being of trial participants and a special ability to communi- cate with them and protect their interests.

At the simple, dignified, and enormously moving memorial cere- mony for the U.N. staff who died in the crash of Swissair 111, Secre- tary General Kofi Annan noted the terrible irony that so many of the dead had taken enormous risks in their work, only to die in a routine flight familiar to all U.N. staff.

This was not the only terrible irony. Jonathan and Mary Lou were on their way to Geneva, not just for another meeting but for a symbolic return for Jonathan, who had resigned from WHO when he clashed with Director General

Nakajima over the prominence given to AIDS. Under the new director general, Gro Harlem Bruntland, there would have been a new era of collaboration. They were both active members of the UNAIDS project to develop a "Guidance Document" for the ethi- cal conduct of international HIV preventive vaccine trials.

A further irony was that a high priority has now been given at WHO and in other forums to the development of an AIDS vaccine. Mary Lou would have been one of the key people in this enlarged ef- fort. And Jonathan had taken up this cause with his usual fervor and dedication. Together they would have made an enormous impact.

Finally, Jonathan and Mary Lou were newlyweds. Married in December 1996, they had found new happiness in each other. That their time together was so brief is still another-perhaps the most tragic-irony.

Still, the pain must give way to determination that their work go forward (they surely would have wanted this). The most appropriate memorial would be the containment of AIDS and the development of an effective vaccine for the world.

Carol Levine Director, The Orphan Project: Families and Children in the

HIV Epidemic

UIE

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