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Medical Confidentiality of Research Subject in Jeopardy--Lawyers Subpoena Anthropologist

Sun, 9 Mar 2003

Dr. Sheldon Zink, an anthropologist at the University of Pennsylvania's Center for Bioethics who was in the operating room when James Quinn had an artificial heart transplant, is fighting a legal battle to preserve a research subject's right to privacy. She is prepared, though hardly anxious, to go to jail, if the legal sharks push her to the wall.

"I think it's a trust issue with researchers in the field, and [sharing field notes] would impact the way we do our research," Zink said. "It would put the research subject in jeopardy, and we should protect them as much as we can."

Lawyers for AbioCor (the manufacturer of the artificial heart) and Hahnemann University Hospital have subpoenaed the anthropologist, who, at the request of Mrs. Quinn became her husband's patient advocate during the last two months of his life.

The case is a cause celebre in that defense lawyers are attempting to coerce a professional to breach patient/subject confidentiality.

Below is an article from the Daily Pennsylvanian and The Chronicle for Higher Education.

For the riveting article about the aftermath of the surgery, see, Sheryl Gay Stolberg's article in the New York Times http://www.nytimes.com/2002/10/08/health/anatomy/08HEAR.html?pagewanted=

http://www.ahrp.org/infomail/1002/08.php

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Daily Pennsylvanian, March 7, 2003

Anthro notes at center of lawsuit

Sheldon Zink has refused to turn over notes she took while observing a medical procedure.

by Lina Shustarovich

Penn medical anthropologist Sheldon Zink has been fighting off subpoenas from local lawyers requesting her to turn over her field notes on an artificial heart transplant into a man who died following surgery.

Zink, director of transplant policy and ethics at Penn's Center for Bioethics, acted as a researcher observing a clinical trial of artificial heart transplantation starting in February 2001. She was in the operating room at Hahnemann University Hospital on Nov. 5, 2001, when James Quinn, one of the volunteers in the clinical trial, received an artificial heart. She was also the patient's advocate during the last two months of his life.

When Quinn died nine months after the transplant, his widow filed lawsuits against Hahnemann, AbioCor -- the maker of the artificial heart -- and Quinn's original patient advocate, Professor of Geriatrics David Casarett, whom Zink replaced upon the Quinn family's requests, as well as other hospitals.

Hahnemann University Hospital spokesperson Molly Tritt said that the suit against the hospital was filed on Oct. 17, 2002. At that point, the hospital issued a statement saying, "We are disappointed that Mrs. Quinn decided to sue us. James Quinn was a true American hero. We trust his contribution to the treatment of heart disease will benefit patients for years to come."

Because of Zink's presence throughout the procedure, both Casarett's attorney Thomas Wagner and Hanhemann's attorney Timothy McCann filed subpoenas requesting that Zink turn over her field notes to the court.

However, she refused to do so, arguing that she must protect the patient's rights to privacy.

"I think it's a trust issue with researchers in the field, and [sharing field notes] would impact the way we do our research," Zink said. "It would put the research subject in jeopardy, and we should protect them as much as we can."

The American Anthropological Association does have a code of ethics stating that "anthropological researchers must do everything in their power to ensure that their research does not harm the safety, dignity or privacy of the people with whom they work, conduct research or perform other professional activities."

Zink said she believes that she is just following this code.

"There is not a circumstance that I can fathom that I would ever give over my ethnographic notes to anyone," she said.

According to Zink, five subpoenas have been filed. One, filed by Casarett's lawyer, was withdrawn on Monday, and an additional four were filed by McCann.

Zink said while the deadlines of the subpoenas filed by McCann have all lapsed, "none of them have been withdrawn," and she thinks that McCann will reinstate them.

"I have no reason to believe that even if subpoenas are canceled right now that they won't be reinstated," Zink said.

"None of these guys have ever picked up the phone and talked to me," Zink added, mentioning that McCann had called her once and was "intimidating" and "threatening."

Wagner confirmed that the subpoena against Zink had been withdrawn earlier this week. It originally held a deadline of Wednesday.

"The subpoena on Dr. Zink was to get her notes because she was observing Mr. Quinn's care while my client was working with Mr. Quinn," Wagner said.

Wagner said that the notes might be helpful in the lawsuit against Casarett because Zink "closely observed Mr. Quinn's care," and her notes might help him defend his client.

However, Wagner said that he withdrew the subpoena "after we learned of Dr. Zink's strong objections."

"I don't want to be hostile," Wagner said. "I want to work the issue out."

"Whether we ever get to the point where we'll serve it again I don't know, but I suspect that we will eventually succeed in working it out," he added.

McCann said that he had previously filed a subpoena against Zink but had canceled it.

"We don't anticipate needing her notes or sending her another subpoena," McCann said. But Zink said she expects continued pressure to turn over her notes and believes that the subpoenas had not been canceled.

The case has drawn national attention from anthropologists and others who want to make sure that field notes are kept private. Zink's students and colleagues have started a Web site called FreeSheldon.org, and other anthropologists have signed petitions supporting Zink's decision to go against the subpoenas, The Chronicle of Higher Education reported.

A statement posted on the Web site states, "Forced disclosure of field notes, tapes and transcriptions endangers the academic freedom safeguarded by the First Amendment. This jeopardizes all of academic research, as well as our ability to disseminate information for the public good. All future anthropological research is being threatened."

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http://www.freesheldon.org/html/chronicle_of_higher_edu_.html

Penn Anthropologist Fights Subpoenas for Field Notes Regarding Artificial-Heart Surgery She Observed

By ROBIN WILSON

A medical anthropologist who observed the transplant of an artificial heart into a man who died several months later is fighting legal efforts to force her to turn over her field notes and says she will go to jail rather than comply.

Sheldon Zink, director of the program for transplant policy and ethics at the University of Pennsylvania's Center for Bioethics, originally faced a deadline of today to turn over her notes to lawyers in a lawsuit involving the use of the AbioCor artificial heart. Although the lawyers withdrew their subpoena for the documents earlier this week, they have not ruled out the possibility of reinstating it.

Ms. Zink's case is drawing national attention from anthropologists who are concerned that it may set a precedent in compelling scholars to make confidential research notes public. Some of her students and colleagues have started a Web site called FreeSheldon.org to publicize her case, and faculty members in anthropology departments at 20 universities have signed petitions supporting her decision not to comply with the subpoena. Others have written affidavits in her support. "I understand the responsibility of just watching," Ms. Zink said in an interview. "I promised my subjects that I would never let anyone else read my field notes. I would not betray a trust in that way."

Ms. Zink acted as an ethnographic researcher observing a clinical trial of the AbioCor heart starting in February 2001. She watched as the clinical team at Hahnemann University Hospital was trained for transplantations, and she was in the operating room when one of the patients -- James Quinn -- received an artificial heart on November 5 of that year.

Mr. Quinn, who was 51 years old when he received the heart, died nine months later. His widow has sued Hahnemann, as well as the maker of the artificial heart and the man who was originally appointed to serve as Mr. Quinn's patient advocate. Lawyers for the former patient's advocate, as well as the hospital, now want Ms. Zink to turn over her research notes. Thomas P. Wagner, who represents the original patient's advocate, said Ms. Zink had "observed Mr. Quinn's care for a long time and what she knows could be of great relevance to the case."

He said he had withdrawn his request for Ms. Zink's notes, however, "after we learned of her strong objections." He added: "We don't want to be hostile to her. We want to work it out." But he said if Ms. Zink won't cooperate in some way, he has not ruled out the possibility of reinstating the subpoena. The original advocate was a colleague of Ms. Zink's at the University of Pennsylvania, David Casarett, an instructor of geriatrics in the School of Medicine. A lawyer for the hospital did not return telephone calls. Ms. Zink said that lawyer also filed a subpoena for her notes last December, but has not followed up on it.

Ms. Zink's role in the artificial-heart experiment did go beyond that of anthropologist. The Quinn family asked her to be their patient's advocate during the last two months of Mr. Quinn's life, replacing Dr. Casarett.

Ms. Zink said she was not paid in her role as patient's advocate and set aside her work as an anthropologist in the clinical trial while she was serving as advocate. As far as the subpoena for her field notes, she said she would "fight this to the bitter end," even though "it terrifies me and I don't like to imagine myself sitting in a cell."

Janelle S. Taylor, an assistant professor of anthropology at the University of Washington at Seattle, wrote an affidavit supporting Ms. Zink. "If this sets a precedent that field notes are fair game for use as evidence in all kinds of lawsuits," she said in an e-mail message to The Chronicle, "then it would of course become impossible to assure confidentiality in any setting."

According to Ms. Zink, professors who head the ethics and public-policy committees within the American Anthropological Association are drafting statements supporting her. But Bill Davis, executive director of the association, said that Ms. Zink is "misrepresenting the association on this." He said none of the association's committees "has the authority to take a position on a public matter like this one." Ghita Levine, a spokeswoman for the association, said the organization lacks "a process for advocating for individual members."

But Mr. Davis said he did understand why anthropologists were concerned. His association has a code of ethics, he said, that says "it is the obligation of individual anthropologists to protect their research subjects from risk or harm that might come from information revealed to the anthropologist."

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