Sunday, January 18, 2009

Parent Scientists, Children & Informed Consent

On Jan. 17, 2009, Pam Belluck published an article online in the The New York Times with the title "Test Subjects Who Call the Scientist Mom or Dad", in which she describes scientists using their own children in their research. The methods employed were observation of behavior and non-invasive diagnostic techniques, e.g. magnetic resonance imaging (MRI) of brain development and electroencephalography (EEG). In MRI, a scanner maps tiny realignments to high radio-frequency pulses in the spin axes of atomic nuclei inside the body that have been lined up in a strong magnetic field. The measurements are used to reconstruct our body's interior in image slices. With EEG, tiny electrical signals from the nerve cells in the brain are recorded with wire electrodes attached to the surface of the scalp. I conducted such studies as principal investigator. The research is summarized in a chapter of a book entitled "Blindness and Brain Plasticity in Navigation and Object Perception." Some essential findings are described in the posts dated Dec. 31, 2008, and Dec. 9, 2007, on this blog. Both techniques do not pose any known health risks to the participants. I submitted the following comment with the article (comment #9): 

Asking someone to participate in a scientific research study resembles in many ways ancient rites of hospitality. If we are invited to stay with friends, we take it for granted that they shall take good care of us and protect us from harm within their limits.

People who wish to participate in a research study that does not benefit them directly, but furthers scientific knowledge at large, expect to be well informed about the risks that the study may pose. They certainly will expect that the principal investigator is not going to put them knowingly in harms way and that, in case of an accident, everything possible will be done for them within reasonable limits.

Commonly, MRI studies do not pose any risk greater than everyday life for healthy people who do not wear magnetic parts or electronic devices in their bodies. However, the procedure may be quite intimidating, particularly when children are involved. Therefore, it certainly is reassuring for the participants to know that they and/or their children are asked to undergo a procedure that the principal investigator and her/his children have undergone before. Of course, the participants have the right to stop the procedure at any time without any negative consequences and, implicitly, this right extends to the children of principal investigators.

The same rationale applies to EEG and, in principle, to behavior studies. However, while the MRI scanner and the EEG recorder deliver objective results, it is questionable whether parents can be impartial observers of their children's behavior.

Important to all studies with very young children, the question remains to be answered whether the mind of a five-year old has developed sufficiently to understand risk and give informed consent.

No comments:

Post a Comment