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.
