Talking ethics in genomics

Hi, I’m Fran Gale, Head of Science Engagement and Enrichment for Wellcome Connecting Science, and I’m joined by Dr. Jon Roberts. And today we’re talking ethics. So Jon, what do you have to consider when you discuss ethical issues around genomics? So I mean, there’s lots of ethical issues that are going to be raised as the technology improves and develops. And I think one of the questions we’re most used to talking about is a kind of should we question– should we sequence all babies’ genomes at birth, should we edit a human embryo? And these are often the questions that they use in fiction– GATTACA or Brave New World. They’re very valid questions.

I think the most relevant questions right now though are ones around equity. So you can think about things like equity of benefit, equity of access, and also ensuring equity in the broader societal sense. So just to break those down, what you might think of in terms of equity of benefit is ensuring that everybody benefits from these new developments in genetic technology. So for example, the polygenic risk score which we’ve talked about before can give you information to make sure you’re receiving the best screening that you can, depending on what your risk is.

But we know that these tests work much better for people from white Northern European ancestries, because those are the people who were in the data sets from where they’re taken. The predictive value drops for people from different ethnicities. And that just simply isn’t good enough. You cannot have– health inequality is a big issue. We know that people from different ethnicities have different health outcomes. And then introducing genetic tests that work better for people from different ethnicities is a real big ethical problem. It’s this idea of equity of benefit, so that everyone is benefiting from these new technologies. Equity of access is also really important. So this is ensuring that everybody has access to these technologies.

So these technologies have huge potential for health benefit and wellbeing, and making sure that that’s available not just based on whether or not you can pay for them. And there’s an interesting concept about what happens if you have unequal access to genetic technologies, what happens if you have people who can essentially pay to opt out of genetic risk and only they can afford it. Where does that leave us in terms of further inequalities and health inequalities in society? So equity of access is really important. And then a final point on equity is thinking about how we create a more equal society with new scientific knowledge.

So there is research that’s looking into things like the polygenic risk scores and the genetics, so things like educational ability and IQ. And a big question is, how do we use that science? Because you can’t just ignore it. How do we use that science and understand it, but ensure that it isn’t then used to justify existing inequalities? How do we use that in a fair and equitable way? So for me, I think equity is one of the key challenges we face in terms of the applications of genomic technologies. Are there any particular hot topics that you think we should be discussing with students?

Yeah, so I think one of the challenges is how to bring in lots of different voices into making societal decisions about what we want to do with this technology, because we’re moving to a point where we’re going to be affected at all sorts of different levels, not just in health but in society at large, in terms of what do we do with these new genomic technologies. Do we use them in education? Do we use them for policing and crime? Do we use them by sequencing all babies’ genomes at birth? And if we are going to be making decisions that are acceptable for everybody, we need to ensure that a wide range of voices are heard.

So I think an important question for educators is, how do you ensure that different opinions are heard and validated? And then how do you use them to create a policy that reflects those opinions in a meaningful way? I think that’s a real big challenge that we’ve got going forward, and a really exciting one from a point where science communication meets science, policy meets science.