Season 4, Episode 3: Hep Burn & Melnikov

In this episode, NorBAC investigates deaths caused by a strange and deadly form of the Hepatitis C virus (HCV). When Rachel and Wes visit a local shelter for homeless people, they learn that deaths have occurred among people who inject drugs. Their investigation leads the team to Dr. Cove, a public health scientist, who is supposed to be helping to stop these deaths; however, the evidence suggests that Dr. Cove may have deliberately infected this group of people with a strain of HCV that he created in his laboratory.

What does society expect of scientists?

As a society, we look to scientists to help us solve many health and social problems. We expect scientists to behave in an ethical manner, to demonstrate integrity, and to endeavor to do more good than harm. Unfortunately, in the past, there have been examples of scientists who behaved very badly and caused injuries or deaths among people in their studies.

Are there rules that scientists are supposed to follow? Today, research involving human beings is governed by a set of principles - autonomy, nonmaleficence, beneficence, justice - to ensure that society is well-served by science. Principles are rules to guide behaviour.

In scientific research that involves human beings, these principles (or rules) are designed to make sure that people can decide if and when they want to participate in studies (autonomy); that people who participate in studies are protected from undue harm (nonmaleficence); that the benefits should outweigh the harms (beneficence); and that all people should be treated equally and have the right to benefit from science (justice). Dr. Cove violated these principles.

Do more good than harm

As a scientist, Dr. Cove is expected to do more good than harm. By infecting people who inject drugs with a deadly type of the Hepatitis C virus, Dr. Cove did much more harm than good. He failed miserably to live up to our expectations of scientists. Maybe Dr. Cove believed that it was okay to infect people who inject drugs because they deserve to be punished. Or maybe he believed that people with addictions never get over their addictions and can be "written off" by society. However, addictions are health problems from which many people do recover, whether with help from doctors or counselors or on their own.

Drug abuse can lead to addiction and many other health and social problems; however, whether a person is abusing prescription medications or injecting illegal drugs, drug abuse does not deny that person his or her basic human rights, including the right to determine if he or she wants to be part of a research project. Indeed, the United Nations says that all human beings are all equally entitled to their human rights without discrimination. Dr. Cove violated the rights of Toronto's intravenous drug user community - and in particular, their right to life.

Asking for consent

It looks like Dr. Cove may have intentionally infected these people out of resentment or vengeance, rather than as part of a research project. But suppose he did so as a part of a research project: What did he do wrong? For one thing - one very important thing - Dr. Cove didn't ask if the drug users wanted to be part of his scientific project or explain the risks to them from being involved. He did not obtain what is called free and informed consent. What does this mean? It means that before participating in a study, people need to know a lot about the purposes of the research, what will be expected of them, and also the risks and benefits they can expect. Once people know about the study, only they can make an informed decision to be part of the study or not.

Maybe Dr. Cove didn't think that people who use drugs can give informed consent because they use substances that may cloud their judgment by making them intoxicated, high or stoned. These effects, however, vary depending on how much and what drugs people use, and the effects go away with time, allowing a person to regain the ability to exercise clear judgment and give (or refuse to give) consent.

Similarly, other factors like dementia or profound emotional distress can impact on a person's ability to give consent at a given time. But with the passage of time, or with medication, someone who was previously unable to give consent may regain his or her ability to do so. Doctors and researchers use specific procedures to determine people's capacity to give informed consent under particular circumstances.

(Be sure to keep reading Science & Society for more discussion of the issues around informed consent in research - coming soon).

Are there safeguards to prevent this from happening?

Scientists are expected to demonstrate ethical behaviour and integrity - and most of them do, which goes a long way; but sometimes these characteristics are not enough to fully ensure ethical conduct. As a safeguard, the organizations where scientists work are expected to make sure that the ethical principles are followed.

Universities, colleges, hospitals and other organizations where a lot of research is conducted are expected to have a research ethics board (REB) to review scientific projects involving human subjects. These REBs include experts in science and ethics and also members of the community. When a scientist wants to start a project, he or she asks to have it reviewed by an REB to make sure that the project is designed to respect participants' wishes, avoid harm, ensure benefit and treat all people fairly.

What Dr. Cove did was wrong. All doctors and scientists are expected to act in an ethical manner and to make sure that they follow the principles described above.

-- Carol Strike, PhD

About the Author

Dr. Carol Strike has a PhD in public health science. She is a research scientist at the Centre for Addiction and Mental Health in Toronto and an assistant professor at the University of Toronto. Her research interests include evaluating addiction and public health programs for people who use drugs.

Want to read and learn more?

http://pre.ethics.gc.ca/english/
The Canadian Institutes of Health Research, the National Sciences and Engineering Research Council and the Social Sciences and Humanities Research Council have a policy to guide the ethical conduct of research involving humans.

http://pre.ethics.gc.ca/english/tutorial/welcome.cfm
Take the TCPS on-line tutorial to learn more about ethical conduct of research involving humans and to obtain a certificate of completion.

http://www.ohchr.org/EN/Pages/WelcomePage.aspx
Go to the United Nations webpage to learn about the human rights of all people regardless of their nationality, place of residence, sex, national or ethnic origin, colour, religion, language, or any other status.

http://www.camh.net
Go to the Centre for Addiction and Mental Health website to learn more about addictions and how to prevent and treat them.