• Question: with the advancement into genetic research growing exponentially everyday, how do you think the public will catch up? specifically in the remit of law making, as in how will laws respond to science being able to screen for genetic diseases at birth. some people may not want to know they have a degenerative disease, but they are babies so they can't say no. do you think laws will have to be put in place to avoid discrimination for certain genes? would this process happen alongside research or would there be a gray area period before the laws were developed, where some people will slip through the net, so to speak

    Asked by area493nag on 25 Nov 2023.
    • Photo: Michael Schubert

      Michael Schubert answered on 25 Nov 2023:

      I think there are a lot of complicated ethical and legal discussions to have about these kinds of questions before we can settle on good frameworks for decision-making. These questions are so subjective that we may never get them completely right for every person in every situation, but we can study people’s opinions, the cultural and societal implications, and previous scenarios and laws that can give us information about how to handle new questions brought about by new science.

      Not everything is handled via law, though; we will likely see guidance that is purely ethical, advisory (so more a recommendation than a rule), or regulatory (which is not always exactly the same as legal). When it comes to medical questions, such as newborn screening, healthcare administrators tend to err on the side of caution because the consequences of getting it wrong can be so severe. (Nobody wants to be sued for revealing a genetic susceptibility without consent!) This means that most ethical scientific and medical professionals will likely approach the issue with a lot of caution until there is strong guidance in place.

      Some of these questions are actually already under discussion. For instance, most genetic tests look at only one or a few genes (those most likely to be causing the patient’s issues). This is partly because genetic testing is still quite expensive and partly because, if you find out something about a patient’s health or risk that isn’t what you were testing for, you then have to deal with the question of whether or not to tell them. It’s a tricky question because the patient hasn’t consented to that knowledge in advance, but asking them if they want to know already tells them that you’ve found something, even if you don’t tell them what it is. It’s even trickier when you find something that can’t be treated (because the patient can’t make the problem go away) or something that is only a risk factor for disease (because it isn’t guaranteed that your finding will lead to a problem).

      You can see how quickly things get complicated! But, because we already sometimes do broader tests or find things we weren’t expecting, we’re already having to tackle the question of what to do with that information when it is found. To make a long story short, though, I think that the science and the laws will evolve alongside one another, and that both of them will be growing and changing for a long time to come.

      Here is some interesting reading material if you’d like to explore these issues in more detail!



    • Photo: Debbie Guest

      Debbie Guest answered on 27 Nov 2023:

      This is a great question and I think that as we find out more we’ll also be able to work out which individuals are more at risk of certain complex genetic diseases than others. This could be good – if it meant that you did more to reduce your exposure to environmental risk factors to reduce your chances of getting the disease. But, what if it meant you could no longer have private health insurance? This could be a bigger problem in countries that don’t provide universal health care.

      But a lot of genetic research aims to identify the biological processes underlying the disease to help develop new treatments. So it is not all about disease screening.

    • Photo: Caroline Hyde

      Caroline Hyde answered on 28 Nov 2023:

      As Michael has mentioned, a lot of the issues around this are ethical questions. However, we must not forget that we already have the ability to detect certain conditions in a growing foetus, which already give rise to such related questions (such as Trisomy 21/Down syndrome). Genetic counselling is a field, that has been specifically developed to assist parents who are looking into conceiving but have an increased risk of passing on a degenerative disease or condition (an example here is Huntington’s disease).
      You are absolutely right in thinking that this is an area that needs special attention and it would certainly be an interesting field to go into, especially if you are passionate about this topic!