Medical Ethics 2.0
As powerful web technologies are applied to the practice of medicine the relationships between patients, health care providers, and scientific researchers will be reconfigured in new and interesting ways. Watching the early stages of this transformation has made me in recent weeks begin to reflect more on how this reconfiguration is going to impact medical ethics. I’ve come to the tentative conclusion that while we are in the very early stages of “medicine 2.0” we are in an even earlier stage of “medical ethics 2.0” and this may have some unforeseen consequences for early adopters of these new web technologies.
Family Medical History 2.0
Injecting “web 2.0” concepts into the practice of medicine has a lot of people really excited, not the least of which are patients. They are starting to realize that some of the best collaborative web applications could be really useful for medical purposes. For example, last week a few users of the wildly popular genealogy website Geni.com requested that the company allow users to add medical information to their family trees. Geni user “caresque” was the first to propose the idea in the forum with the following message:
SUGGESTION - Medical histories are vitally important to many families. So much can be done with this it’s unreal. I would consider adding a “Medical” option along with the favorites and personal information, where someone could add major medical problem(s) or cause of death. It would be really cool if eventually this information could be linked to the tree or a tree could be created showing who in the family was affected by it. This information would need to be tagged as only visible to family. It would be an incredible genetic visual for so many!
A “web 2.0” family medical history tool would enable a whole new level of functionality for users that existing medical practice could not begin to approach. Such a tool would make the collection of family medical history a much more efficient process by distributing the effort asynchronously across members of the family. No matter how a family is scattered around the globe, individual members of the family could easily collaborate electronically on the web to build a shared family medical history.
The accumulated information might be more detailed, timely, and accurate than current practices allow. Paper medical history forms are still the norm in much of medical practice. They rely on the efforts of a single patient to either remember the medical history of all other members of their family or to spend time calling each person one by one. In the “medical 2.0” version, as medical events occur, individuals could log-on to the collaborative family medical pedigree and update their profiles. These updates could be automatically shared with other relatives using the tool, who might even be subscribing via RSS feeds.
Patients might also choose to invite their physicians to the collaborative family medical history tool. Such a tool could provide physicians with features for manipulating the family medical history data in useful ways. Physicians might even be able to add information themselves or send electronic messages to patients in the pedigree they’re viewing for clarification on specific diagnoses, etc.
Duty to Warn 1.0
A genetic test result provides information that has a special significance in medicine in that it not only reveals information about the patient under care, but this same result may also have implications for the patient’s family members, who might also carry the same genetic condition.
Sometimes a patient who receives a positive genetic test result chooses to hide this information from family members (or lie to family members). They might choose secrecy for well-intended reasons like wanting to shield parents from guilt or to protect siblings or children from distress.
If a care provider learns about the intention of their patient to hide the result from family members they can get caught in a serious ethical catch-22 where they have no choice but to violate one of two ethical principles they swore to uphold. On the one hand they swore to uphold the confidentiality of their patient’s medical information. On the other hand, they swore to cause no harm. Withholding genetic test results from a patient’s family members could cause harm to those individuals because they may not get the medical attention they need as a consequence.
This conundrum has given rise to a concept called the “duty to warn” where in some circumstances care providers feel an obligation to violate the privacy of a patient in order to protect the safety of family members at risk. There is precedence in other areas of medicine outside of genetics for this practice, such as infectious disease and psychiatry (via Tarasoff jurisprudence).
There is disagreement among health care professionals about the duty to warn. Last week the British Medical Journal highlighted this issue with a “head to head” debate between two genetics professionals with opposing views. One clinical genetics professional summarized how circumstances may arise where the most ethically acceptable action would include violating patient privacy in order to protect family members:
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. UK professional guidelines tell us that where there is a serious preventable harm confidentiality may be breached, and professionals looking after whole families may feel a moral obligation to inform all the family members who may hold the same genetic information.
The author provided the following illustrative 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.
…genetic information…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…
Clinical geneticist Angus Clarke takes a different viewpoint:
[There is a] tension between the wish of some people to keep secret some of their medical history and their simultaneous obligation to disclose it to others, when it may be important for those others to find out about it. This is not specific to genetic issues but applies to sexually transmitted diseases, some other infectious diseases, and certain other environmental hazards such as chemical or radioactive contamination. Affected people are obliged to disclose such risks as soon as they realise that they may be a danger to others. If they fail to perform this duty, health professionals may have a duty to warn others instead. In many jurisdictions, legislation forces doctors to disclose information concerning some infectious diseases and also, in relation to driving, personal information about epilepsy and other potential problems.
Are genetic disorders sufficiently similar to infectious diseases—gonorrhoea, syphilis, HIV—that doctors have a similar duty to enforce disclosure by patients or clients to other members of their family? I would argue that they are not, even when we agree that disclosure would be highly desirable…I suggest that genetic information should be regarded as private and personal; to treat it as if it were owned in common by a body as vague and ill defined as “the family” is flawed.
Duty to Warn 2.0
The thought experiment I have been grappling with is as follows: What if these two genetics professionals were software engineers instead of health care practitioners and they were given the task of designing a web 2.0 family medical history tool that the Geni users so clearly desire? How would they capture their ethical positions in computer code and how would the final web applications be different based on their differing views about disclosure and the duty to warn? Which web application would be most popular among patients? I’m guessing it wouldn’t be the one with built in rules for privacy violation. What would the end user agreements and privacy policies look like?
This is an area to watch. Duty to warn is just a convenient example, there are numerous others. Oddly, I haven’t been able to find any scholarly research in this topic. Have I missed something?