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We all share our genetic make up with relatives, and Anneke Lucassen argues that we should also share ownership of the results of DNA analysis. Angus Clarke believes, however, that in most cases the knowledge can be considered private
The genetic code is held inside the cells that make up a person's body. The genetic material, cells, and body might be seen to belong to that person, but does the genetic information deduced from this code belong (solely) to the individual? Just because you own a hard disk, does it mean that you own the data on it? Or a DVD, the film?
Information from a particular section of genetic code can allow predictions or conclusions about a person's current or future health. The genetic code is inherited from parents and passed on to offspring. This transmission cannot be entirely avoided or altered. The red hair or blue eyes that a child has inherited from their parent signify a shared section of genetic code. Someone with achondroplasia probably has a mutation in the FGFR3 gene. Can it be said that the person owns this genetic information when it is clear for all to see?
When genetic information is not obvious to the outside world, or may become apparent only in the future, people have a right to expect some privacy, but this is not the same as having sole ownership of the information. The difficulty arises when a genetic test on one person tells us something about the genetic code held by others. How to balance a right to privacy with disclosing risks to others, who may be unaware of their potential genetic inheritance? Should they be told, and does the person valuing his or her privacy have the right to veto this disclosure?
Where genetic information points to an intervention that would decrease the morbidity or mortality from a disease, taking an individual ownership stance could lead to harm in others. Take the following analogy. A company identifies traces of a contaminating, toxic substance in a batch of tinned beans after one woman develops symptoms. The woman owns her contaminated tin but does not own the other tins in the batch, which have the same chance of causing illness in others. The woman is entitled to privacy and patient confidentiality but cannot say that she does not want others informed of the danger; nor can she prevent disclosure on the basis that she owns the information about the poisoning.
This ownership debate arises from a difficulty in practising genetic medicine, which by definition involves families, in a modern medical framework that lays huge emphasis on individual autonomy. Patient confidentiality is, of course, one of the most important cornerstones of medical practice. Patients need to know that doctors will keep their details private. Trust in the relationship and the ability to make autonomous decisions would be diminished if this was not a fundamental concept in medical practice. Nevertheless, confidentiality is rarely seen as absolute, and there are both statutory and professional guidelines on exceptions to the duty of confidentiality.1 2
Genetic medicine has rarely been mentioned as an exception because few highly predictive genetic tests have been available and there are relatively few evidence based interventions. As the evidence base increases (such as for bowel screening in familial bowel cancer; prophylactic surgery in familial endocrine neoplasia), so does the tension between preserving individual confidentiality and communication of genetic risk to others. The Human Genetics Commission's 2002 report suggested that “genetic solidarity” and altruism should be promoted,3 and several authors have challenged the supremacy of individual autonomy in genetic medicine and introduced versions of family rather than individual confidentiality.4 5 6 For example, the joint account model argues that since genetic information is shared by more than one person, the conventional model of confidentiality should be reversed: the genetic information should be available to all “account holders” (family members) unless there are good reasons to do otherwise. These models are useful in encouraging a different perspective towards genetic information and reflect that most individuals availing themselves of genetic medicine do so with some degree of altruism.
However, when families do not agree, or are unable to contact others at risk, clinicians may be left knowing there are potential harms to others that might be prevented. Most genetic services have support mechanisms to work with families and their doctors to ensure that people at risk are appropriately informed. Direct communication between the medical professional and family members at risk is successful and acceptable.7 8
Clearly, doctors cannot be expected to trace all relatives in extended families across the world.9 The challenge is how to deal with the situation when doctors know the identity of people at risk but consent to communicate that risk has not been obtained. There is no UK case law on this subject, but US courts have made opposing decisions, with one concluding that a doctor should have informed relatives despite the insistence of the affected person that he did not.10 11 UK professional guidelines tell us that where there is a serious preventable harm confidentiality may be breached,1 and professionals looking after whole families may feel a moral obligation to inform all the family members who may hold the same genetic information.
In conclusion, this debate is more about privacy than ownership, but if anyone is to own genetic information it has to be all those who have inherited it. More importantly, it must be available to all those who might be at risk. Methods for sharing information need to be sensitive and relevant, but today's increasingly individualistic modern medicine must find ways of facilitating this. It should not be denied because of a narrow view of information ownership.
Competing interests: None declared.