Re: Yianni et al., Globus pallidus internus deep brain stimulation for dystonic conditions: A prospective audit

✍ Scribed by Niall P. Quinn; Kailash Bhatia

• Publisher: John Wiley and Sons
• Year: 2004
• Tongue: English
• Weight: 32 KB
• Volume: 19
• Category: Article
• ISSN: 0885-3185
• DOI: 10.1002/mds.10653

✦ Synopsis

such a proscription might also be a practical impossibility, we are not yet ready to claim that such majority influence is never permissible. In extreme circumstances, the overwhelming will of the afflicted "stake-holders" in a rare disorder may indeed be one of several valuable factors in determining the direction of research into their condition. An analogy might be drawn to a doomed aircraft in which a minority of passengers have expressed an advance wish to know if the plane will crash and a majority have requested in advance to remain totally ignorant-and where the pilot must either inform or not inform all passengers en masse; the minority's "right to know" should not be automatically and totally dispositive. Yet we confine such reflections to those theoretical situations in which the research is unlikely to lead to any short or long-term medical benefit to either the patients AR or to the general public, and in which there are no genetic implications that might affect reproductive decision-making; in other words, to those in which only "pure" knowledge and the minority's right to full disclosure is at stake. That is not the case here. While letting the cat out of the bag regarding a link between RBD and MJD will inevitably force knowledge upon unwitting AR individuals, their "right not to know" is outweighed, we believe, by the potential clinical benefits presented by the proposed research.

If future studies show that RBD does correlate with gene status in MJD 3, the occurrence of the syndrome in AR individuals would not be equal to a definitive diagnosis, since RBD does occur in otherwise neurologically healthy individuals who do not develop other neurological disorders. We conclude by noting that RBD diagnosis depends on polysomnography and that MJD 3 diagnosis requires gene testing.