When our personal genetic information is no longer private

There has been much debate in the last few weeks about the ‘compulsory’ nature of the Government’s Public Services Card. Many of those concerns revolve around increased levels of State intrusion and the threat to personal privacy. This is a threat also posed to an increasing extent in the medical world as knowledge of genetics increases and with it the possibility that insurance companies will demand information of each person’s genetic make-up before deciding to cover them or not. The State may also demand genetic information from us in the name of ‘public health’.

This is a significant debate within contemporary bioethics and one that generally focuses on the boundaries, if any, that must be set with respect to any ‘rights’ to acquire personal genetic information.

This debate is important because it highlights a fundamental conflict between two public goods; the right to privacy and the desire of the State to collect data that may assist in the public prevention or management of disease.

Most of us for example, would automatically answer ‘yes’ to the question; where possible do you have a moral obligation to reduce the amount of suffering in the world?

But what if in bringing about that happy state of affairs a particular party chose to ignore traditional protections around personal consent?

In 2003, a joint inquiry by the Australian Health Ethics Committee (AHEC) and Australian Law Reform Commission (ALRC) recommended that privacy legislation be amended to broaden the circumstances in which health practitioners may use or disclose genetic information without consent.

The Privacy Legislation Amendment Act 2006 allowed health practitioners to use or disclose patients’ genetic information, whether or not they give consent, “in circumstances where there is reasonable belief that doing so is necessary to lessen or prevent a serious threat to the life, health or safety of their genetic relatives.”

On this reading, consent is far from an overriding value.

Related issues were also raised in the US when in 2004 the Genetic Information Non-discrimination Act, (GINA) that aimed to protect Americans against health insurance and employment discrimination based on their genetic information was signed into law.

Equivalent protections in Ireland are found in the Disability Act which provides safeguards for the use of information obtained from genetic testing. The provisions aim to ensure “that people who may be affected by genetic disorders will not be subject to any unreasonable requirements from an employer or an insurance or mortgage provider.”

But what if we look at this through the lens of Minister Regina Doherty’s defence of the Public Services Card, namely that “to the highest levels of authentication, you are who say you are.”

Just how far does that ‘authentication’ process extend and what happens when a person feels it violates their fundamental rights to goods like genetic privacy and consent? What happens when rights collide?

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