The ethics of parents as researchers, and of researchers as parents.
The New York Times recently did a story on researchers’ use of their own children as subjects.
The article discusses the case of Dr. Pawan Sinha, a neuroscience researcher at MIT who, shortly after his baby Darius was born, put a camera on Darius’ head to record what the baby looked at, while awake.
Here’s the story: Test Subjects Who Call the Scientist Mom or Dad
“Some research methods are clearly benign; others, while not obviously dangerous, might not have fully understood effects. Ethicists said they would consider participation in some projects acceptable, even valuable, but raised questions about the effect on the child, on the relationship with the parent, and on the objectivity of the researcher or the data.
“The role of the parent is to protect the child,” said Robert M. Nelson, director of the Center for Research Integrity at Children’s Hospital of Philadelphia. “Once that parent becomes an investigator, it sets up an immediate potential conflict of interest. And it potentially takes the parent-child relationship and distorts it in ways that are unpredictable.”
Using your own children in your research is not a new concept. Those who study language acquisition and child development have been using their own children as subjects for many years. Because of clear practical constraints, it seems for some kinds of longitudinal observational studies, such as the acquisition of language, it is the best or only method available (which doesn’t necessarily make it right for other kinds of research).
Lots of discussions of this phenomenon focus on the perceived “conflict of interest” of the parent-researcher. But I think that there is more to it than simply “conflict of interest” although this is clearly an issue — for the parent as primary caregiver and the parent as researcher.
Here are several points worth considering:
1. The relationship between researcher and participant has obvious boundaries and usually, fairly explicit expectations. Part of ethically sound research involves trying to make the researcher-participant relationship and roles as predictable and objective as possible (and clearly distinguished from other roles and relationships), thereby mitigating certain kinds of risks, to some degree. The parent-child relationship involves emotions and dependency. It also not only predates the research but will also continue well after the research is completed. These attributes put predictability, objectivity and clear differntiation from other kinds of roles into question.
2. An unexpected “a-ha” moment, in most research projects, involves observing phenomenon that are unusual or were not predicted. Finding an unusual or unpredictable finding about your own child in any of a number of kinds of research (while asking questions, say, about sexuality or depression or doing an MRI of the brain) might certainly raise emotionally-challenging or otherwise difficult issues for parents, especially if it was a finding with negative connotations or sequelae.
3. The integrity of the research is, at the very least, in jeopardy. Those who look at research with a critical eye do pay attention to ‘already-standing relationships’ that researchers have with participants when evaluating the veracity, validity or reliability of research findings. In many kinds of qualitative research, the measures of quality are understandably different. However, even in these kinds of research, in which already-standing relationships are more common and acceptable, care must be taken to preserve the quality of the data as well as the integrity of both the researcher-participant relationship, and of the already-standing relationship. In the case of the latter, the focus must be on preserving the integrity of already-standing roles and relationships for the sake of the participant, not the researcher. When all the decisions about participation in research are made by a parent-researcher for a child, the integrity of the parent-child relationship is already altered for the child, who now clearly serves two roles.
4. Voluntariness is an issue for all children involved in research conducted by their parents, but — perhaps counterintuitively — it is especially problematic for children who are at an age at which they are capable of providing assent or consent. When REBs look at any kind of research involving children and youth, they want to see that the researcher has taken care to avoid coercion or undue influence to participate and that the voluntary nature of participation is protected. They also want to be sure to communicate to kids that the choice, for example, not to participate will not result in anyone being angry or disappointed. Not as easy to do when “dad” is the researcher, I’d suspect. For infants, that’s not an issue; for older kids, it is.
5. As a parent, the choice of involving your child in research is generally up to you. Society expects that, as a parent, you have your child’s best interest at heart. If the research is actually your own research, however, which you need to complete to further your career, to get an academic promotion or to put yourself in a better position to acquire research grants, I think it’s reasonable to say that your child’s best interests might not be the only thing you have in mind.
Research Ethics Blog 
I’d be very interested if you had any further ideas on the proper ethical role of parent researchers motivated to advance knowledge of their children’s rare and life limiting condition. (I’ve sent you an email about this)