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When a University Kills Suicide Research

July 7, 2008

Ask Russel Ogden why he studies suicide, and the sociologist answers by quoting Shakespeare: "To be or not to be?" The Bard's question has never been more relevant, Ogden said in an interview about his studies of people with terminal diseases who take their own lives.

Hamlet's question might also apply to the latest phase in Ogden's research. Kwantlen Polytechnic University, the British Columbia institution where Ogden works, is trying to prevent him from observing assisted suicides. An ethics review board at the university approved the research, but the university has since barred Ogden from carrying out his plans. While suicide is not illegal in Canada, assisting a suicide is illegal, and the university has equated Ogden's proposal to observe assisted suicides with assisting suicides himself.

The dispute has become public in the last week, with Canadian faculty groups charging that the university's actions are a violation of academic freedom, and that the principles cited by the university endanger not only Ogden's research, but the work of social scientists throughout the country who study illegal acts in part by observation. Sociologists in the United States say that the case is important for them as well -- and illustrates how studying some of the cutting edge issues in bioethics can create challenging ethical and political issues for academics and universities.

Ogden is no stranger to controversy or to suicide, which he has been studying for 18 years. He first became interested in the subject when "as a teen, I had a couple of close friends who took their lives," he said. "Those suicides had a profound impact on me." Ogden doesn't romanticize suicide. "I regret that they died. I wish that they were still here."

But with legal and political debates growing about whether people with incurable diseases should be able to end their lives -- and with some people not waiting for the law, and doing so -- Ogden found the topic to be one in need of sociological inquiry.

Even before he decided that he wanted to observe assisted suicides, he has faced lengthy legal battles. He wrote his master's thesis at Simon Fraser University on the decision of some AIDS patients to take their own lives, and he interviewed some of those involved, promising full confidentiality under terms of a research protocol that had been approved by the university's ethics committee.

He spent several years in the '90s in courts over this research, successfully fighting off demands from the Vancouver coroner's office that he reveal information he considered confidential relating to one of the deaths. At the same time, he fought with Simon Fraser, which didn't back him in court and only later agreed to provide some of his legal expenses.

Since then, assisted suicide has continued to divide members of the public, in Canada and the United States. A petition drive has been filed in Washington State to permit medically assisted suicide. Ogden's research has been cited over the years both by proponents and critics of assisted suicide. He describes himself as "supportive of individual choice" for a terminal patient to decide whether to live or die.

But Ogden is quick to say that supporting choice does not mean he or his research are designed to encourage anyone to make that choice. Ogden said he is interested in the decisions people make -- to consider suicide, to carry it out -- and the impact this has on survivors, medicine, medical professionals, and so forth. He stressed that he does not want to actually help a person commit suicide, but to watch and, as possible, interview those doing so -- typically with his having conducted numerous interviews beforehand.

Among the many protections he worked into his research protocol was one designed to prevent a would-be suicide from being influenced by his presence: Ogden would tell anyone contemplating suicide that he is as interested in those who opt to stay alive as those who take their lives -- so a last-minute decision to live would in no way disappoint him or his research. He also makes clear that he will in no way help with a suicide.

The various protections Ogden outlined won the approval of his university's ethics board. But then the university administration got involved, and told him that he couldn't proceed because the university believed that his research might be illegal. The university declined to discuss the case, but released a statement outlining in its views in general terms.

"As a university, we encourage and support research which addresses important issues, including controversial issues, in a responsible manner," the statement said. University reviews "take into account the legal and ethical dimensions associated with the proposal, the means by which the researcher intends to address those legal and ethical dimensions, and the appropriate protections for research subjects." In this case, the university consulted with "one of Canada's foremost criminal lawyers about the legal implications of the proposed research. Based on our due diligence, including the lawyer's opinions, we concluded that there were real and unacceptable legal risks associated with the proposed research. In the circumstances, we could not allow the research to take place in its proposed form with Kwantlen's support."

Not only have faculty groups already obtained countering legal opinions, but they say that the opinion the university obtained wasn't based on knowledge of all the protections Ogden put in place. Faculty groups also note that the standard being applied is completely different from that used in other cases. If Kwantlen is not challenged, they argue, much other research could be hindered.

John Lowman is a criminologist at Simon Fraser who was director of graduate studies when Ogden was a graduate student there, and backed him in the dispute over the earlier research. Lowman studies prostitution and much of what he observes for his work is illegal. "I routinely witness criminal activity," he said. "I am a field criminologist. That's what we do. What good would it do if criminologists just study those who have been caught," he said.

Lowman said that the blocking of Ogden's research is "a flagrant violation of academic freedom."

The Canadian Association of University Teachers appears to agree. James Turk, executive director, said that his organization commissioned a legal opinion backing the research. He said that professors can't be in the position of going through a strict ethics review, getting the appropriate sign-off, and then having senior administrators veto their work. "He's a respected social scientist doing research on illegal behavior, but many sociologists study criminal behavior," he said. "If this is upheld, much important social science research would be blocked."

The association has started a formal inquiry into whether Kwantlen has violated Ogden's academic freedom. In addition, numerous academics in Canada are now speaking out about the case -- trying to build public pressure to let Ogden go ahead with his studies.

For sociologists in the United States, the Ogden case renews concerns about how to protect research ethics while not hindering research. When social scientists observe illegal activity or even the planning of illegal activity, or even if they don't observe activity but talk to people who did, their rights aren't always protected. Rik Scarce was a graduate student at Washington State University in 1993, studying radical animal rights groups, when he was jailed for five months for refusing to answer a grand jury's questions about some of those he had spoken to who were believed by law enforcement officials to have been involved in attacks on university laboratories. Scarce, who now teaches at Skidmore College, wrote a book about his experiences called Contempt of Court: A Scholar's Battle for Free Speech From Behind Bars.

Virginia Adams O'Connell, a member of the American Sociological Association's ethics committee who is about to become an assistant professor of sociology at Moravian College, said that Ogden's case raises numerous issues. While O'Connell has not studied suicide, she does work in medical sociology and bioethics, and said that there was no doubt about the interest in the work Ogden is doing.

"I find assisted suicide a fascinating topic," he said. "For me, there is that sense in which any of us could commit suicide. The fact that someone is looking for someone to help is a call for legitimization," she said, raising a range of issues for scholars to consider. The sociologists' ethics committee is currently looking at issues related to note-taking when observing illegal activity, she said.

While there is interest by sociologists in studying many illegal activities, she said, there is concern about how to have good protocols to protect confidentiality of sources -- even if notes are subpoenaed by legal authorities. "People need to think about how to protect those notes before you observe the behavior," she said.

"It's important that this case is raising these issues," she said.

Earl Babbie, a sociologist at Chapman University, is currently leading a panel of the American Sociological Association on how to teach research ethics. He said that he is reluctant to discuss the ethics of any project that he hasn't been able to examine in length, but he said it was clear from public information that Ogden "is not being casual" about the ethical issues raised by his research.

Babbie said that in teaching about research ethics, he tends to offer various examples to consider. If a sociologist is observing an activist group and it is planning an illegal but peaceful protest, he said, there would be "broad agreement" in the discipline that there is nothing wrong with observing and no obligation to try to stop the activity or inform authorities.

But suppose, he added, you are a social scientist observing a group that is planning to assassinate someone. "I say you tell the police," he said.

Even if that's clear, he said, there is the sense among those being studied that "you are going to respect their privacy," he said, generally by watching and interviewing and not intervening. Ogden's research suggests how much such research in the future, Babbie said, may provoke new disputes.

 

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