Published 10 December 2008, doi:10.1136/bmj.a2915
Cite this as: BMJ 2008;337:a2915

Letters

Regulation’s threat to research

Time for patients to speak out?

The first 150 words of the full text of this article appear below.

For two studies with ethics approval on which I currently represent patient interests—both linking primary care or hospital records with cancer registry records—the Patient Information Advisory Group has taken six months and almost a year to enter them on its register of approved studies1; without such an entry cancer registries will not release their data. If the reviewers, grant awarding body, and local research ethics committee think that the study is important and methodologically sound, surely it is unethical to hold the research up in this way?

The pursuit of patient confidentiality, often by patient representatives, is almost obsessive and can be in no one’s interests, particularly patients’. Allowing experienced researchers to access anonymised medical records has little potential for harm, but the default position, which the public has been conditioned into adopting, seems to be that any attempt to do so is a wicked infringement of personal rights. . . . [Full text of this article]

Christine A Gratus, consumer representative and service user1

1 London W5 5LH

c.gray@which.net


Add to CiteULike CiteULike   Add to Complore Complore   Add to Connotea Connotea   Add to Del.icio.us Del.icio.us   Add to Digg Digg   Add to Reddit Reddit   Add to StumbleUpon StumbleUpon   Add to Technorati Technorati    What's this?

Relevant Article

Regulation—the real threat to clinical research
Paul M Stewart, Anna Stears, Jeremy W Tomlinson, and Morris J Brown
BMJ 2008 337: a1732. [Extract] [Full Text]

Access jobs at BMJ Careers
Whats new online at Student BMJ