Who owns your DNA?

There is no doubt that genetic testing and the mapping of the human genome has changed the face of medicine, but it also raises new debates over ethics and, more importantly, who owns your genetic information?

In the United States, the answer depends on which state you live in. If you live in Oregon or Georgia for example, it appears that you have genetic ownership, but if you live in another state, say California, then you don't.

In 2003, the Australian Law Reform Commission and the Australian Health Ethics Committee of the National Health and Medical Research Council (NHMRC) produced a report for the Australian government outlining the ethical, legal and social implications of the emerging genetic revolution and technology.

The report went on to say that although the central themes of the inquiry were ethical standards, privacy protection and protection against unlawful discrimination, the report also examined the impact of 'new genetics' across a very wide range of social and professional contexts.

The inquiry looked at obvious issues such as the ethical oversight of genetic research and the increasing use of DNA collection and testing by law enforcement authorities. Other questions considered by the inquiry included:

• The regulation of genetic testing in the workplace
• The collection and use of genetic information by the insurance industry
• Genetic testing by immigration authorities
• DNA parentage testing
• The use of genetic testing as an element in the construction of kinship and identity
• The use of genetic testing to identify potential sporting champions.

Dr Michael Field, a clinical geneticist at Royal North Shore Hospital in Sydney, believes that a patient's genetic information must remain his or her own, and not be available to others without their permission.

"Consultations between a clinician and a patient are anticipated to be confidential," he says." The patient can share information from their consultation as they choose. This confidentiality can only be broken in situations where a doctor has reason to believe that others will be harmed because the patient has withheld information."

"But only in extreme circumstances where you have reason to believe that an individual is putting others at risk can you break confidentiality. The law in this area has not truly been tested except in a case of non-disclosure of an HIV result to the partner of an infected male."

In 2002, the Human Genetics Commission issued a report suggesting that 'genetic solidarity' and altruism should be promoted. In the UK, guidelines on releasing genetic information state that where there is a serious preventable harm, confidentiality may be breached.

Dr Field agrees, saying that only in extreme circumstances where there is reason to believe that an individual is at risk could a clinician break that confidentiality.

"The information doesn't belong to the health professional but because of their legal responsibility and in terms of commercial interest, the lab could claim some ownership," he says.

"Patients are all made aware that their DNA is stored in any testing laboratory indefinitely and ownership is not currently considered."

Recently, the debate has shifted from ownership rights of the individual to the possibility of future employees accessing genetic information prior to offering employment; a proposal Dr Field believes could lead to discrimination based on the genetic information. He does, however, believe that under certain circumstances it is in the public interest for information to be available.

"If an airline pilot presents with an inherited cardiac rhythm problem then this would be appropriate information to disclose," he says. "But overall, the nature of the information that may be gained from pre-employment genetic testing would be no more specific than information collected from a family questionnaire."

"Essentially, the extra health and potential preventative information we get from genetic assessments should be considered a positive benefit and not seen as having negative connotations. Ultimately, these negative aspects, if not protected by legislation, may reduce acceptance and uptake of this technology."