by Suzanne M. Rivera, Ph.D.
For legitimate reasons, the human research enterprise frequently is regarded with suspicion. Despite numerous rules in place to protect research participants’ rights and welfare, there is a perception that research is inherently exploitative and dangerous.
Consequently, most people don’t participate in research. This is not only a fairness problem (few people undergo risk and inconvenience so many can benefit from the knowledge derived), but also a scientific problem, in that the results of studies based on a relatively homogeneous few may not be representative and applicable to the whole population. Larger numbers of participants would improve statistical significance, allowing us to answer important questions faster and more definitively. And more heterogeneous subject populations would give us information about variations within and between groups (by age, gender, socio-economic status, ethnicity, etc.).
Put simply, it would be better for everyone if we had a culture that promoted research participation, whether active (like enrolling in a clinical trial) or passive (like allowing one’s data or specimens to be used for future studies), as an honorable duty. (Of course, this presumes the research is done responsibly and in a manner consistent with ethical and scientific standards, and the law.) Read More