Dr Rony Duncan

Postdoctoral researcher Dr Rony Duncan, of the Murdoch Children’s Research Institute, an affiliated institute of the University of Melbourne, is a specialist in the ethical implications of medical science, especially in adolescent health.

She speaks here about genetic testing and young people to University of Melbourne scientist Shane Huntington, who interviewed her for an episode of the University’s audio podcast series Up Close. This is an edited extract. The full text and the podcast are available here.

Q Your interest in medical ethics has a focus on empirical research. Do you work predominantly with young people?

A Yes, my interest in ethics started when I studied genetics and the topic that captured my attention in the beginning was genetic testing in children and adolescents. It’s a controversial area with implications for counsellors and clinicians who work with young people in the field of genetics.

I developed a strong interest in adolescent health because my PhD focused on this topic of genetic testing in teenagers. I had to do a lot of reading around adolescent health and development, for example, what happens during adolescence and why genetic testing might be more difficult for a teenager than for an adult. So, I am now working at the Centre for Adolescent Health, bringing my knowledge of ethics to the field of youth health.

Q I can imagine genetic testing being applied to young people where there is a family history or something to that effect. What are the ethical issues around that and why is it different for children or for young adults?

A It is fair to say that some people think it is different for teenagers and other people think that it isn’t any different for them. And I guess that’s why it’s a controversial topic.

Someone with a family history of Huntington disease, for example, would be able to undergo what is called a ‘predictive genetic test’ which would give them information about whether they would go on to develop Huntington disease in the future. At the time of their test they wouldn’t be symptomatic. The test provides information about their future health.

We use Huntington disease as an example frequently because if you have a gene positive test for Huntington disease, meaning that you carry the mutation, there is certainty that you will go on to develop the condition. If you don’t have the mutation you can therefore be sure that you will not go on to develop the condition. Many other types of genetic tests deal much more with probabilities. They’re not quite so black and white, for example, the genes for breast cancer predisposition.

Q So what is the issue with telling or not telling a young adult?

A As an adult, if I wanted to have a test for Huntington disease, I could walk into the clinic, as long as I had a family history and decide that I wanted a predictive genetic test. However international guidelines put out by the UK, Australia, Europe and the USA generally show consensus that testing under the age of 18 years or under the age of majority, depending on which country you are in, should be avoided.

Concern exists that psychosocial harms might occur in teenagers who find out that they are going to develop something like Huntington disease, or perhaps something like breast cancer, or even Alzheimer’s.

As a teenager you are still developing close relationships with peers, still putting together ideas about what you might want to do for a career and for a future, still deciding about things like having children and getting married. The concern is that it could be very difficult to find out such information about your future at that time of your life and therefore, perhaps it should be avoided.

In terms of the arguments against testing in young people, one of the key arguments is around autonomy – people’s ability and right to decide what happens in their own lives as long as those decisions aren’t harming other people. The argument is that perhaps children and teenagers are not sufficiently mature and competent to make an autonomous decision about whether they want the information or not.

If we allow young people to have that information about their future, or if we allow parents to test their children and obtain that information, what happens if those children grow up and decide that they don’t want the information and decide that they didn’t actually make an informed choice?

Q You’ve been interviewing people and getting feedback on how real life situations have evolved. What are the outcomes?

A I interviewed 18 young people between the ages of 12 and 25 who had actually been tested for either Huntington disease or another condition called FAP which stands for Familial Adenomatous Polyposis, a genetic condition for which young people are tested routinely.

The idea was to talk with them about what sorts of impacts the genetic tests have had for them, whether they felt any regret about the test, and whether it changed their views about careers or relationships, and all those aspects of life that would be impacted by knowledge about future health. It was about trying to understand the way that they had experienced their predictive tests and also the time after their test.

Q How do you assess the competence of a young person to decide?

A Competence is a huge topic in medical ethics at the moment. Competence to make a decision about genetic testing would have to involve a range of things, including an ability to understand the nature of genetics, an ability to think about the future and to think in a very abstract way about what sorts of things your genetic information may affect. Employment options and discrimination around things like health insurance are examples of factors that would have to be taken into account.

Competence would need to include being able to understand those implications and that information and also to understand the impact the information will have not only for you on a personal level, but for your family and the people around you. And to think not only about the information you would like today, but what information you might like to have (or not have) in 20 years time.