I’m doing my human research ethics refresher training at work this week and ended up rereading parts of the Belmont Report (the flagship document on the ethics of human subjects research in the United States, written in the 1970s in response to some of the atrocities uncovered during the Nuremberg trials as well as some of the horrors unearthed in our own history). The section of “Respect of Persons,” deemed a “Basic Ethical Principle” by the authorial committee, particularly stood out to me:
“Respect for persons incorporates at least two ethical convictions: first, that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection. The principle of respect for persons thus divides into two separate moral requirements: the requirement to acknowledge autonomy and the requirement to protect those with diminished autonomy.
An autonomous person is an individual capable of deliberation about personal goals and of acting under the direction of such deliberation. To respect autonomy is to give weight to autonomous persons’ considered opinions and choices while refraining from obstructing their actions unless they are clearly detrimental to others. To show lack of respect for an autonomous agent is to repudiate that person’s considered judgments, to deny an individual the freedom to act on those considered judgments, or to withhold information necessary to make a considered judgment, when there are no compelling reasons to do so.
However, not every human being is capable of self-determination. The capacity for self-determination matures during an individual’s life, and some individuals lose this capacity wholly or in part because of illness, mental disability, or circumstances that severely restrict liberty. Respect for the immature and the incapacitated may require protecting them as they mature or while they are incapacitated.” (emphasis added)
I wish this principle was applied more broadly in our society, and not merely codified into our human subjects research policies. Can you imagine what it would look like if, instead of shunting the homeless and mentally ill to the back or our minds and the sides of our communities, we considered them to be fully human agents able to make decisions and entitled to protection, not neglect or abuse, when incapacitated through disease or lack of opportunity, education, and health care? Maybe it would pave the way for people to reintegrate into society; maybe it would end some of the isolation and stigma surrounding people and their loved ones who are going through a situation in which they need help and aren’t fully able to advocate for themselves.
Can you imagine how the next generation would live if we raised our children with these principles of respect? If we valued their autonomy, took seriously their opinions and decisions, gave them the freedom to try and fail and learn and succeed, and equipped with the information and logical skills to choose wisely? If we stopped viewing them as possessions and status symbols and means to our own self-fulfillment, and instead truly considered them to be autonomous agents (immature and in need of our guidance and protection, yes, but not for us, or belonging to us, for our pleasure or our reputation)? We wouldn’t have the wounds of a child who can no longer live up to his parents’ expectations and feels like he’s going to bring their whole world crashing down, or of a child who is scared to try because he’s scared to fail and doesn’t believe he has the ability to think and act for himself, or of a child who is abused or neglected by parents thinking only of their own pleasure or convenience. And we wouldn’t have all those old wounds festering in the hearts of the adults who are leading our country, our businesses, our churches, and our families…
Can you imagine what the tender and vulnerable bookends of life could become if we viewed those people as entitled to our protection? Instead of the womb being a place where life only continues at the whim of another person, where the vulnerable human who cannot yet speak for himself or make his own decisions isn’t even given the basic protection of his own life, maybe it could become a place where the vulnerable are valued and protected with gentleness and love, preparing the baby within for the autonomy that will grow and mature within him. Instead of the last years of illness, frailty, and dementia being felt as a burden on the greater society, and the less autonomous being pressured to end their lives to reduce the strain on the community’s resources, maybe it could become an opportunity for the healthy and strong to learn love and sacrificial service in protecting and comforting the sick and dying.
Research isn’t the only thing that needs to be governed and informed by basic ethical principles.