Genetic Privacy

Have you ever made a discreet visit to the doctor without telling your family? The diagnosis of a family member with certain conditions could imply risks to your health. But it’s their right to withhold the information from you. Where are the lines drawn on the contentious issue of genetic privacy?

Your Genetic Privacy

You wouldn’t tell everyone you know every time you visit the doctor. But when it becomes more serious do you have a responsibility to share personal medical information? And conversely, do you have a right to access the medical history of your ancestors?

Genetic privacy comes into play in the management and distribution of private medical information. This information is tugged in two directions by conflicting interests: one, the interest of the patient whose diagnosis should be kept confidential (patient/doctor confidentiality) and two, the interest of the potential patient (a family member) who could be taking preventative measures in view of the first patient’s diagnosis.

Many medical conditions are hereditary, and there are preventative measures that relatives are often advised to take. But can a doctor break the patient confidentiality bond?

Privacy in Practice

The Department of Health takes a firm stance on patient privacy. Medical professionals will always put the patient first, respecting their right to privacy. If you wish to keep your condition secret from family members, you have every right to do so. If you don’t want your medical information used for healthcare research, or even passed on to other professionals, your wishes will be respected.

What are the exceptions? The Department of Health requires that the disclosure of medical information, whether the patient is dead or alive, meets the requirements of the Data Protection Act. Disclosure is only permitted when:

• There are reasonable grounds (to protect the patient, their family, or community)

• It is considered democratically necessary (particularly where it might affect others)

• It is proportionate to the need.

The British Medical Journal has debated the question of patient privacy. Taking the example of a young man who, diagnosed with a genetic disease, decided not to tell his two siblings, the Journal asked whether a doctor’s responsibility to the patient should always comes first. The doctor has three options: to remain silent, respecting his patient’s privacy; to try to persuade the patient to disclose his diagnosis; or to inform the family members. Under the Data Protection Act, health professional should always opt for the first choice. But is this the most ethical decision?

There are certainly grounds for reassessment of the Data Protection Act, which the BMJ supposes will come under review in the next few years – particularly as genetic testing becomes the norm. The American Society of Human Genetics already recommends that doctors should be permitted to pass on genetic information to family members where a patient refuses to do so.

Insurers and Employers

Your employer has a right to ask for genetic medical information about you, but the Data Protection Act insists that (s)he has a reason for doing so. Any medical information, including hereditary and long-term conditions, must be stored in a separate place and not made available. Insurers, too, will ask intimate questions about your medical history. They’re bound by the same rules and must not use your information except for research purposes (to improve their own services). In the US, developments are underway to change these privacy invasions. A law to protect genetic privacy is being considered in the House of Representatives. Under the new law insurers and employers would have no right to deny you insurance or employment because of your genetic history. This would mean you wouldn’t be charged more for a family history of cancer – effectively banning genetic discrimination.

More About Genetic Privacy

You can read more about genetic privacy in Graeme Lawrie’s book “Genetic Privacy: a challenge to medico-legal norms”. The Department of Health’s Code of Practice is available to view online.