October 30, 1997 * Vol . 10, No. 5
by Russel Ogden
ALL RESEARCH INVOLVING human subjects shares a common link. Whether it be investigation into white-collar crime, child prostitution, or police corruption, subjects won't divulge sensitive information if they risk punishment. For this reason, the professional convention of researchers is to take pains to protect the confidentiality and anonymity of research participants.
SFU's 20-month-old draft research policy, R20.01, would effectively outlaw inquiry into illegal behavior because it expects researchers to cooperate with any "court or other legal body" pursuing confidentially obtained data. Under the camouflage of "informed consent," the policy requires researchers to inform participants that "guarantees" of confidentiality are only genuine as long as no authority challenges them.
The existing policy (last updated in 1992) values free and ethical inquiry and puts a premium on the privacy, informed consent, confidentiality, and anonymity of research subjects. It affords a privilege to sources, protecting them from disclosure of confidential data:
"[E]ach subject is to be given the freedom to decide for himself or herself what information which is not already in the public domain or available to an ordinary member of the public and which relates to his or her physical and mental condition, personal circumstances and social relationships should be communicated to or withheld from others."
I submit that there are very few circumstances where confidential data should be surrendered for law enforcement purposes and that the researcher-subject relationship would be served best by seeking judicial clarification in any situation where pressure is brought to bear on promises of confidentiality. Researchers must be clear about the scholarly rationale for a study and it is paramount that confidential data be collected only to answer the research questions. If a researcher thinks this impossible, then an alternative research design should be conceived.
In 1994, SFU's research ethics policy was tested following publication of my criminology MA thesis which detailed acts of euthanasia and assisted suicide amongst persons with AIDS. The Vancouver Regional Coroner issued a subpoena and ordered that I reveal confidential data. I refused because of a personal promise of absolute confidentiality. The promise was consistent with the conventions for criminological research and also received ethical clearance from the university ethics committee. Moreover, SFU's research policy required confidentiality and articulated a "professional responsibility of researchers to adhere to the ethical norms and codes of conduct appropriate to their disciplines."
For SFU's administration, however, the issue was not as clear as the ethics policy and terms of reference for my research protocol. The university dissociated itself from the legal inquiry and declined to take part in the proceedings.
SFU avoided a provision in the Coroner's Act that allows third parties "whose interests may be affected by evidence likely to be adduced at an inquest" to appear at an inquest, tender evidence and call witnesses. Indeed, scholarly support came from UBC: professor Richard Ericson and Mr. Andrew Johnson gave the court expert opinion about the fundamental importance of confidentiality in research.
Ultimately, the court accepted a common law argument that I could not be compelled to answer questions that would breach confidentiality because there are strong societal interests in protecting confidentiality.
Following the ruling, Dr. Bruce Clayman, SFU's vice-president, research, wrote to the criminology department: "Assurances of confidentiality are highly desirable in a variety of research areas in the social sciences. . . . I was of course pleased at the decision of Vancouver Coroner Campbell in Mr. Ogden's case. I hope that it will be taken as a precedent in future considerations of similar cases." If that is indeed true, one should expect that Dr. Clayman will oppose the draft ethics policy because it contradicts the spirit of the court's decision.
If my research into euthanasia had been conducted under the proposed R20.01, a qualified legal privilege for researchers may not have been won. R20.01 would have expected "co-operation," meaning that I divulge the names of the sources sought by the court and probably the names of nearly a dozen other individuals actively involved in euthanasia and assisted suicide.
In the worst-case scenario, the research subjects would have faced long terms of imprisonment for "crimes" of mercy and compassion: no researcher would ever again receive access to underground euthanasiasts; the reputation of researchers in general would be stained; the public would be condemned to continued national debate and policy discussion without the backing of empirical evidence.
The draft of R20.01 was developed nearly two years ago in the midst of still unresolved legal controversy and it appears to require that researchers facing legal action should compromise confidentiality:
"Any information that is obtained during this study will be kept confidential to the full extent permitted by law. . . . However, it is possible that, as a result of legal action, the researcher may be required to divulge information obtained in the course of this research to a court or other legal body. . . . All researchers should be aware that their ability to protect anonymity and privacy of the participants is specifically limited by law."
In other words, under the proposed policy, confidentiality would not really exist because the primary ethical concerns of the privacy and anonymity of research subjects would be subordinated to the will of courts and "other legal bodies." This would be a serious blow to academic freedom.
The question is, does confidentiality exist now? Even though R20.01 has not yet been approved, the above-mentioned language has already been integrated into the informed consent (Form 2) in the present policy, fundamentally altering the protections that were formerly available to research subjects.
The draft policy's escape clause retreats from any commitment protecting confidential data and undermines researchers whose personal ethics lead them to challenge orders to violate confidentiality. If, as per R20.01, research subjects are informed that promises of confidentiality are limited, the door is opened for courts or "legal bodies" seeking access to data to argue that both the researcher and subject anticipated the possibility of forced disclosure and therefore waive any claim to a legal privilege. What appears to be a safety valve could easily lend itself to systematic legal invasions of research subjects' privacy. Can academe afford this kind of blank cheque?
Criminological research often requires sensitivity in acquiring the trust of research subjects. There are grave implications for the academic community if researchers are expected to supply information to a "court or other legal body," because that depowers research subjects and seriously inhibits free and ethical inquiry.
The concept of informed consent for research participants is paramount, yet, on this principle the R20.01 draft commits its own ethical breach: it does not disclose that the university will arbitrarily decide whether to extend moral, financial, or legal support to a researcher's defence. If research subjects are entitled to detailed information before participating in a study, then researchers also merit an equivalent level of humanity from their institution.
It would be an insult to free inquiry for SFU to retreat from protecting confidentially obtained information. The current draft version of the working group policy on research ethics (formed by the three federal granting councils) recognises that violating confidentiality could ruin the trust relationship between the researcher and the research participant.
A similar relationship frequently exists in journalism. Last year, the European Court of Human Rights (ECHR) overruled the British House of Lords and declared that the protection of journalistic sources is a basic condition for press freedom: "Without such protection, sources could be deterred from assisting the press in informing the public on matters of public interest. As a result the vital public watchdog role of the press could be undermined and the ability of the press to provide accurate and reliable information could be adversely affected."
Given that researchers are frequently social critics, the ECHR conclusion could be applied equally to the researcher-subject relationship.
The proposed R20.01 policy represents a significant threat to academic freedom and its priorities are clear. It exists for the protection of the bureaucracy first, the researcher second, and the participant last. Of course, researchers have other options. They can offer and keep personal guarantees of confidentiality. On those rare occasions where the courts intrude upon the research enterprise, scholars who demonstrate an unwavering commitment to the pursuit of knowledge will serve as examples for high moral standards within academe.
Two decades ago sociologist Jack Douglas lamented that scientists were "overwhelmingly concerned about their private and professional risks" and plagued with a self-doubt that rendered them impotent to protest against those who seek to regulate free speech and free inquiry. His advice to the repressed researcher was, "Let me suggest two steps. First, tell them -- 'Nuts!' If that doesn't stop them -- 'Fight like hell!'"
Russel Ogden earned an MA in criminology from SFU in 1994. He was
awarded the 1995 Sterling Prize in Support of Controversy for his research
into AIDS and euthanasia and for his successful defence in Coroner's Court.
In May 1996 Simon Fraser News did not publish an earlier version of this
article because it was believed that it could compromise Ogden's lawsuit
against SFU for legal costs incurred in Coroner's Court. A ruling on the
case is pending.
Note:For a response to this column, by Dr. Bruce Clayman, SFU's vice-president, research, see: The law of the land.)
© Simon Fraser University, Media and Public Relations