We’ve cracked the genetic code, now what?

Hard laws and regulations are needed to protect our genetic information. California Institute for Regenerative Medicine

The rapid development of genetic science and technology holds hope for greatly improved health outcomes, with better diagnostics, treatments and cures, as well as the beginning of pharmacogenomics and truly personalised medicine.

The Human Genome Project spent US$3.2 billion in an international effort to sequence fully the first human genome, culminating in the joint announcement by Bill Clinton, Tony Blair, Francis Collins and Craig Venter in 2000.

A decade later, we can do this for as little as $2500, and the $500-or-less genome is imminent. It’s likely we’ll soon have a smartphone app to access details of our own genome, or the ability to link to cloud computers which store the three billion base pairs of our own DNA.

Of course, the expertise to translate this mass of complex information — and its interaction with environmental factors — into sensible health and medical advice will be considerably more expensive and elusive.

There is currently strong public support for human genetic research, genetic testing, and other applied uses of DNA technology, such as forensic testing and analysis by law enforcement authorities.

At the same time, it is understandable that there is an underlying social anxiety about the ability of governments to regulate these developments and protect the public.

Specifically, we must develop and implement sound and effective policy to:

  • ensure the protection of personal privacy, while understanding and respecting that DNA, and potential abnormalities, are shared among family members;

  • guard against stigmatisation and unlawful discrimination;

  • maintain the highest possible ethical standards; and

  • promote access and equity in the distribution of the benefits of advances in genetic science and medicine.

Initial concerns and controversies in the media have related mainly to aspects of medical research and private insurance coverage.

However, the potential reach of genetic information is enormous and growing, with ethical, legal and social concerns arising in a wide variety of contexts.

Do employers have the right to order an employee or a job applicant to undergo genetic testing, or to provide predictive genetic information?

Should applicants for individually risk-rated insurance (such as life insurance) be required to supply known genetic information for underwriting purposes?

Can the federal government require potential immigrants to undergo genetic testing for health or identity purposes? What about schools, nursing homes and sporting associations?

Can DNA be used to determine an individual’s ethnic or racial identity, or whether they can be recognised legally as an Indigenous person?

To what extent should genetic information be used in the criminal process?

If a defendant has biological markers that predict poor behaviour (addictive personality, risk-taking or “warrior” genes, for instance), is “my genes made me do it” an adequate defence? Or might it actually be an aggravating factor?

The challenge is to develop policies, standards and practices that promote the intelligent use of genetic information, while providing a level of security with which the community feels comfortable.

This will involve some “hard law” and regulation, but it will be even more important to develop a broad mix of strategies. These must include community and professional education, and the development of official standards and industry codes that reflect emerging international best practice in this area.

David Weisbrot is a panelist on today’s University of Melbourne’s Festival of Ideas event, The Genetic Revolution III: Legal, Ethical and Moral Dimensions.

See our other Festival of Ideas coverage:

Determined to be different: what we do changes the wiring of our genes by keynote speaker Matt Ridley

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