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The data that makes you, you

How do we manage an avalanche of genetic data?

The colour of your hair and eyes, your height, and your susceptibility to certain diseases. Your genetic material is everything that makes you, you. And it is undoubtedly your property.

Or is it? Should your genetic material be available for research for the good of humanity? And what sort of rules should be in place to protect your privacy?

As technology and genetic research move forward rapidly, the law needs to keep up. Professor Dianne Nicol, Director of the Centre for Law and Genetics, is investigating the new “avalanche” of genetic data with her Australian Research Council grant, Genomic Data Sharing: Social, Legal and Research Ethics Issues from Australia.

Your genes and your genetic information say so much about you as an individual, but also your family and your ancestry. It’s a really rich research resource.

“As a society, I think we want to facilitate use of that resource so that we can understand more about what it is that makes us human, what it is that gives us particular attributes, and what makes us suffer from particular diseases.”

Professor Nicol said the research needs to address the tension between the need for the openness of genetic data for research and the acknowledgement that it’s deeply personal at the same time.

There’s a tension in making sure that we have openness in the research data, but also ensuring that the privacy of that data is protected and people are free from discrimination.

“The other real challenge is that if we use that data in the development of new health care resources, we need to make sure that there are incentives to actually carry through research in to the clinic,” she said.

“We need to ensure that there is some attraction for commercial companies being involved, because they’re the only entities that have the capacity to develop new products. But at the same time, we don’t want them to have exclusive property rights over our data so that it shuts down other research.”

In all of this, there’s also the need to consider what the public thinks about all of these issues.

“There is a lot of need to talk with industry, researchers and government,

but also members of the public, so that we hit the right level of facilitating research, facilitating product development, but at the same time, protecting the public and maintaining public trust.”

The government has recently allocated a large amount of funding to genomic research. A steering committee will examine the big strategic issues, and Professor Nicol will be bringing her legal and regulatory expertise to the committee.

“I have the opportunity to go and talk to members of the public, talk to researchers, and then there’s a real possibility that this research will have direct, immediate outcomes to Australian society.

“It’s research that has a really sound theoretical component, but is also evidence based,” Professor Nicol said.

I’m really excited to see how our research can feed in to that the agenda that about how we decide what research should be supported in to the future.

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