For decades, a contentious question in healthcare has been – Should consent be necessary for the use of leftover human material in research?

I would like to cover the main arguments in the cases for and against this idea. Both sides raise interesting ethical questions which are helpful to answer in an effort to navigate healthcare in everyones best interest. These will be the backbone ideas for each side – both could be dug into more thoroughly but I am mainly interested in conveying the main ideas.

Here is my view on the matter; Consent should be necessary for the use of leftover human material in research.

Against

The ‘Against’ position holds that one believes consent should not be necessary in this matter – human tissue should be available for additional research irrespective of consent.

To me, the most convincing point for this position is the principle of self-determination vs. solidarity. In this setting, acting with self-determination means the patient has the right to turn down the use of their biological material for research. Solidarity however, requires that the well-being of the group takes precedence over the individual. Because of the potential benefits that research could yield for humanity, especially in the case of rare diseases, a recipient of care is obliged to make humanity the beneficiary of their ailment. The opportunity cost associated with consent is a price that should definitely be reckoned with.

For

The ‘For’ position holds that one believes that obtaining consent should be necessary for the use of leftover human material in research.

I think that most people would agree that healthcare should be a universal human right. If this is the standard that we aim for, then we must be respectful of differences in values – the right to healthcare should stand irrespective of an individuals beliefs. If an individuals belief system collides with further use of biological material for research, then it is not right to deny them care on these grounds. The well being of the individual takes importance over the loss of material for research.

Here’s an important question to ask, and I think the answer compliments the ‘For’ position nicely:

How important is the public perception of the healthcare system?

I think the answer to this is very. The social benefits of requiring consent are higher than not, as it will increase trust and participation. If people maintain their autonomy, I think most would be willing participants in research anyways. Contrary to the ‘Against’ position, a system which denies consent is too costly in terms of samples lost due to unwillingness to seek out healthcare. The opportunity cost of not asking for consent higher than asking for consent.

At first glance, the utilitarian approach to this question is to take the ‘Against’ position, as it maximizes the benefit to humanity through obtaining the most data possible with the highest sample yield. The more research done the better, right? Right, but I think it’s clear that more research will end up being done if healthcare policy adopts the ‘For’ position. More people will be willing to participate if they are educated on the potential benefits, as well as if they see the system as fair, respecting their autonomy. For a long time, this question did not have a concrete answer in healthcare policy. I believe it is important when making decisions to consider the information on both sides of the issue. The more information and knowledge we have, the easier it is to navigate these difficult decisions.