Perhaps less obvious is the trust that research subjects put in the sponsors of research. For one thing, they trust that sponsors with a vested interest in the outcomes of research won’t pressure researchers to cut corners on safety, or to continue a trial despite an unanticipatedly high rate of adverse events. They also trust that sponsors with access to intimate information about them won’t misuse that information.
Now, should participants trust sponsors (funders) of research? Clearly, no general answer is possible. Sponsors vary — they include a wide variety of government agencies, charitable foundations, and corporations. Some of those have good reputations for trustworthy behaviour; others have less-sterling reputations.
So, here’s a question for Ethics Boards: in protecting the interests of research subjects, how much should they trust various sponsors? Should the nature (e.g., for-profit, nonprofit, etc.) or reputation of the particular sponsor matter? After all, people trust (I think) charities more than they trust for-profit corporations. And even within the not-very-well-trusted pharmaceutical industry, the trustworthiness of companies varies considerably, at least if we judge by their past behaviour.
Further question: how should Ethics Boards respond to international variation in trust? According to PR firm Edelman’s annual Trust Barometer, there are significant differences internationally in the extent to which people trust business in general. People in France, for example, trust business much less than people in India do. So, if Ethics Boards were to take trust into account, should they follow different standards depending on where the research is to be done? Shouldn’t they be guided by the values and beliefs of research subjects?
Think of it this way: in believing that it’s not foolish for them to participate in research, research subjects are effectively trusting a chain of individuals, institutions, and committees. Now, think of the old saying: “a chain is only as strong as its weakest link.” It applies to ethics, too. A process is likely only to be as ethical as its least-trustworthy (or most biased) component.