An education in ethics

Dr Ainsley Newson*, Associate Professor of Bioethics at Sydney Health Ethics, University of Sydney, talks mitochondrial donation, targeted testing and other ethical dilemmas ahead of the AACB AIMS 2018 Combined Scientific Meeting.

Lab+Life Scientist: How did your interest in bioethics begin?

Dr Ainsley Newson: My interest in bioethics was sparked by a couple of things that happened to me when I was still a teenager. First, one of my biology textbooks in high school had a genetics chapter — and I devoured it. I was absolutely fascinated by the way that we are linked together and what that might mean for who we are and what we do. Second, at the start of my final year of high school I had the opportunity to attend what is now called the National Youth Science Forum, which is geared to show students the huge range of careers in science. At this event, I had the opportunity to meet someone who worked in government, and they provided me with a copy of a committee report on genetic engineering. This report opened my eyes to the huge questions around the social, ethical and regulatory implications of genetics. From that point, I knew I wanted to work in bioethics. Thinking about it now, I am incredibly fortunate that I have ended up exactly where I set out to be.

LLS: Your research interests include mitochondrial donation, which a Senate committee recently recommended legalising in Australia. In your opinion, is it safe and is it ethical?

AN: As an academic in bioethics, it is not for me to say whether mitochondrial donation is safe or not. That said, there has been some careful consideration of this question in numerous countries. But it’s also important to note that we are never going to get to a point where this technology has zero risk. And so the question from an ethical perspective is what level or understanding of safety is the point at which we feel comfortable to allow this technology to be used. There is also a secondary question, which is to ask to whom that decision about safety belongs. Does it belong to regulators? Does it belong to the scientists and the clinical providers of mitochondrial donation? Or does it belong to those who might be choosing to use this technology?

A Senate committee recently made some recommendations that could be said to have set Australia on a path to eventual legalisation of mitochondrial donation. This is not going to be a straightforward process, because of the kind of legislative instruments that currently operate in this space. I was one of the academics who gave evidence to this Senate enquiry and in that I stated that I cautiously endorsed mitochondrial donation. It can be ethically used; however, this is not to say that it should be a technology that we enter into frivolously. To me, the two most significant issues are firstly why it is that we value genetic relationships between parents and children — for it is the desire for this relationship that is the entire reason why mitochondrial donation is sought to be used by couples who are at risk of passing on mitochondrial disease. Is genetic relatedness between parents and children something that has absolute value, or do we value it merely because we are socially conditioned to do so? Second, we need to think about how we treat each of the stakeholders. In the United Kingdom, the process of egg donation for mitochondrial donation is set up so that it is up to the donor herself whether to be identified to the person who might be born. I think that this could mean that children born of mitochondrial donation end up having different information, depending on the decision of the person who made the donation. We shouldn’t make those kinds of distinctions. Both as a form of recognition of donors and also to allow the person born to access any relevant information in the future, Australia should not allow anonymous egg donation. I’m really pleased that the Senate committee took this position in its report.

LLS: Is there any merit to the argument that mitochondrial donation could be the first step on the slippery slope to designer babies — and if it is, there anything wrong with that?

AN: Some argue that mitochondrial donation is step one on a very slippery slope to the creation of so-called designer babies. I don’t make that argument and I don’t think it has any merit. First, mitochondrial donation is designed to be used for a very specific purpose: to avoid the birth of children who will grow up to live with debilitating diseases with significant morbidity and mortality. Second, the slope is not that slippery. We can use regulation to limit any potentially concerning applications of mitochondrial donation: we can control who can have access to it and who can offer it.

But as we are also getting closer to the point of using reproductive technologies to prevent other kinds of diseases (such as through genome editing of nuclear DNA), it’s time to have some discussions around our recognition and acceptance of diversity and difference in society. We have a tendency towards controlling variability. We have a tendency to try to limit anything that departs from the ‘normal’. But I don’t think that’s realistic as to what parenting and life in general are like. We need a conversation around the fact that achieving perfection is not only impossible, but actually also risks losing things that contribute to the richness of who we are as a group of humans forming a society. Yet, I also think that there are certain conditions which it seems entirely reasonable to wish to avoid a person being born with, if there were safe, equitable and affordable steps that could be taken to do that.

LLS: You’re a keynote speaker at the upcoming AACB AIMS conference. Why do you think the conference organisers were particularly keen to seek out your expertise for this event?

AN: I think the closing plenary at the upcoming AACB AIMS conference is designed to give the audience a perspective that they might not otherwise hear in their daily work. I’m hoping to inspire members of the audience to critically reflect on views that they might intuitively hold but have never explicitly questioned.

LLS: What topic will you be discussing at the conference?

AN: I will be discussing the recent phenomenon in medicine to use testing opportunities to provide increasing volumes of information to patients. This can both be in the context of reporting information that was identified as a surprise during the testing process (incidental findings), or something that we deliberately look for. Two questions arise. The first is how we should go about this process of managing expectations around what might come out of testing. Second — and this is the question I’ll focus on — I’d like to determine whether we should routinely look for more things rather than less when testing. My presentation will be informed by some work that I’ve been doing with colleagues at Sydney Health Ethics that looks at the relationship between information and autonomy. We’ve been questioning this idea of whether autonomy can merely be promoted through providing more information.

LLS: Would you be able to summarise a couple of the arguments for and against giving patients more information rather than less?

AN: One reason in favour of giving patients more information rather than less is that it enables a single test experience to potentially be more valuable. A test could not only answer the clinical question that led to it being ordered in the first place, it could also cause additional diagnoses to be suggested. If these are conditions where there can be a treatment or an intervention, then arguably that’s quite a valuable thing to do. However, I have a few reasons to be cautious. Firstly, I’m doing some research in the area of overdiagnosis and I worry very much that areas like biochemical testing and genomic testing are not yet supported by an evidence base to support routinely offering predictive risk information. Returning more information rather than less can generate a cascade of further intervention, including further invasive testing, when a person may never have gone on to develop the condition. We should not be routinely offering this information until it meets agreed evidence thresholds. Additionally, theoretical arguments can be had around the relationship between information and autonomy. There is a problem in the way that autonomy is discussed in a lot of bioethics literature, in that the way to promote autonomy seems to be through the provision of information. Now, providing information is of course important. But information alone cannot guarantee autonomy and it is certainly possible to limit autonomy through providing too much information. We should be designing practices in clinical testing to ensure that we don’t automatically introduce the provision of more information just because we can.

LLS: What do you think is the biggest ethical dilemma currently in the areas of genetics and biotechnology?

AN: That is a really hard question. If I had to pin it on one thing, I think I would say that the biggest dilemma to me is a perfect storm of under-regulation and over-commercialisation, meaning that new technologies are being pushed through before they’re ready and before their appropriate clinical usages have been defined. We are currently living in a world where hype plays a big role in whether things happen or not. Our climate is one in which patient voices are incredibly important and appropriately so, but we also need to try and ensure that those patient voices are cognisant of the limits of information. When there are potentially conflicting interests at play, which are not always made transparent, then I worry that patients could be clamouring for inappropriate technologies. Instead, I think we should proceed from a basis of defining clinical needs and then adapting technology to meet them. What worries me is that at the moment it’s the other way around: clinical needs are being created to meet new technologies.

LLS: Finally, are you excited by the future of science and biotechnology, or are you concerned that new technologies are coming along too fast for us to properly consider all ethical concerns?

AN: I’m really excited about new technologies that come along. I think the power of things like genomics help us to understand who we are and to offer a diagnosis to a person or a family who until now have not had any answers is incredibly important. That said, I think broader application of these technologies is sometimes happening too fast and without justification. If I had to describe my approach, I would say that I’m focusing on what I call prudent implementation of new technologies and part of that prudential or precautionary approach is to make space to undertake critical examination of ethical and other related aspects when implementing them.

*Dr Ainsley Newson will be delivering the closing plenary ‘The end of targeted testing? Should patients routinely be given more information?’ at the 2018 combined scientific meeting of the Australasian Association of Clinical Biochemists (AACB) and the Australian Institute of Medical Scientists (AIMS), to be held from 3–5 September at ICC Sydney. Dr Newson has published over 80 refereed papers and book chapters on the ethical aspects of emerging genetic and reproductive technologies and their implementation, co-chairs the Education, Ethics and Social Issues Committee of the Human Genetics Society of Australasia and sits on the NSW Health Clinical Ethics Advisory Panel. She is a regular commentator on ethical issues in genetics, genomics and emerging biotechnologies.

Top image credit: ©stock.adobe.com/au/Scott Maxwell