Two Tales of Conjoined Twin Separation

In one story, two once-conjoined toddler girls are heading back to the Dominican Republic, having been successfully separated by a day-long surgery that divided their liver, pancreas and other shared organ systems and reconstructed their abdominal walls. Virginia Commonwealth University had a farewell party for them. In the other story, one of two girls separated at Santiago, Chile's Calvo Mackenna Hospital has died, and her sister is said to be in stable but critical condition. The two, who had had a shared intestine and liver, had been struggling since their 18-hour separation surgery in early November.

The decision to attempt to separate conjoined twins is an ethically challenging one. First, there are the medical risks. Sometimes separation is simply out of the question; sometimes it is medically required if one or both of the twins are to survive infancy. Often, though, separation is surgically possible, but risky. The question then arises, "What risks should parents submit their children to for the sake of bodily normalcy?" An additional problem arises if the medical risks of separation are not be shared equally between the twins: May one twin be put at risk, or even sacrificed, for the sake of the other's attaining a more "normal" life?

There are also some very complicated questions about the motivations of the parties seeking separation. After all, many twins have lived happy lives without separation, and a certain amount of desire for separation may be driven by social pressure for bodily normalcy and biases against disability. (Parents and medical personnel can, of course, share those social attitudes.) More troubling is the possibility that the separation surgery is being pressed by physicians or hospitals for the sake of publicity or reputation-enhancement.

To be clear: I cannot tell from the media coverage which of the above questions or ethical problems were in play in either of the two stories I cited above. It's just that the simultaneous stories, with their very different outcomes, put me in mind of this set of issues.

Canadian AIDS Researchers Oppose HIV-Exposure Prosecutions

The current CMAJ includes this letter from three researchers at the British Columbia Centre for Excellence in HIV/AIDS, arguing for an end to Canada's criminal prosecution of people who allegedly expose sexual partners to HIV. The letter points out that the actual risks of transmission to sexual partners are quite low for well-controlled HIV; that prosecutions have never been shown to reduce rates of infection: and that they may in fact discourage or interfere with HIV testing and treatment. In this interview, one of the co-authors also notes that while Canadian rates of prosecution for HIV exposure have been on the rise, there is no similar policy of prosecuting those who expose partners to other potentially serious viruses like HPV.

Patient Access to Medical Information

A group of health-related federal agencies have proposed a new regulation which would permit clinical laboratories to release test-results to patients who request them. (Currently 39 states either have no state law explicitly permitting such release to patients, or have laws mandating release only to physicians or other healthcare providers.) The current JAMA has a thoughtful analysis of some the questions raised by the new rule. The regulation is supposed to decrease physician workload, reduce the number of patients who never receive test results, and improve follow-up rates. But there are a lot of questions: will patients understand their test-results? will they experience needless anxiety over results that are abnormal but inconsequential? is it useful for patients to receive test results on their own, without medical interpretation or counseling?

Meantime, in the UK, Her Majesty's Treasury has announced in its Autumn Statement (p. 40) that all NHS patients will have online access to their own medical records by the end of this parliament (that is, by 2015). This raises a lot of questions about security and privacy, of course; but also about whether patients may be pressured into supplying their records to third parties.