Friday, 30 June 2017

Standing up for research participants


Jane Tiller (left) presents to the inquiry

By law in Australia, any genetic finding discovered in the course of medical research returned to the participant must be disclosed to life insurance providers when applying for a policy, should the provider request it. Providers can use this as a reason to deny or restrict cover, regardless of whether the change is proven to increase the risk of disease.

SPHPM’s Dr Paul Lacaze and Jane Tiller made a case for legislation or a moratorium on the use of genetic information by life insurers at the Parliamentary Inquiry into the life insurance industry in Canberra recently. A legislative ban or moratorium would give researchers time to understand the clinical significance of genetic risk variants and would bring Australia into line with countries including the UK, Canada and most of Europe.


Jane says,

“If I were to participate in a trial right now where my genes were sequenced and an unusual genetic change was found, I may be denied life insurance in future, in spite of the fact that the change may be benign, or unsupported by robust risk data.There are concerns around transparency into insurer decisions based on genetic information.

"Genetic research offers great hope for the future and we rely on volunteer participants to drive it. People opting out because of life insurance concerns, whether they are real or perceived, is a major threat to Australian medical research.”

An Australian study from 2009 found that people informed about insurance risks when consenting to research were more than twice as likely to decline participating than those who were not informed.1

After completing her law degree, Jane worked as a lawyer for a number of years. She is currently completing her Masters in Genetic Counselling and works part-time within the Monash Public Health Genomics Program, led by Paul Lacaze. Together they have been investigating the issue of providing genetic results back to research participants. It was while researching this issue that Jane stumbled across the Parliamentary Inquiry. She says,

“I was researching the issue of life insurance companies using genetic information and found a reference to the inquiry. Although there was nothing in the terms of reference regarding the use of genetic information, I realised that it was an opportunity to raise our concerns.

We prepared a submission in late 2016. Off the back of that, I met with one of the Committee members, who agreed that this was an important issue. The Committee invited us to present face-to-face at a hearing in Canberra in May. I feel we got a positive reception from all of the Committee members, who were really interested in what we had to say. I am hoping that this will drive change and that in the future, the genetic information of research participants will be protected.”

You can see the parliamentary video of Jane and Paul’s presentation here (begins at timecode 14:35).

References:

1. Keogh et. al. (2009). Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications? MJA, 191, 255–258.

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