Finding What is There: A Medical Ethics Challenge

By Rachel Walden |

Several prominent blogs have recently covered the story, first reported by Alice Dreger and Ellen K. Feder at  Bioethics Forum, of pediatric urologist Dix Poppas and his research involving clitoral surgery on young girls and young intersex patients to make their genitals less “masculinized” — that is, less large.

The research, conducted at New York Presbyterian Hospital, Weill Medical College of Cornell University, is troublesome for a number of reasons, including lack of indication of an underlying medical problem. In each case, the clitoris was deemed simply  too large, whatever that might have meant to the girls’ parents or the girls’ physicians.

Not only are the surgeries, as well as the accompanying attitudes and ethics, hugely problematic, but there are also issues with the follow-up study, which involved applying a cotton applicator and/or a vibrating device to determine how much nerve sensitivity was retained. Poppas was stimulating the genitalia of young children for the purposes of research, and it’s not clear to readers of the related research papers that those patients had a clear ability to consent or withdraw consent or how the potential for psychological harm was addressed.

The ethics of this research and how it was approved in the first place are quite important. But here’s another issue to consider: The articles in which this research was described were published in The Journal of Urology, a prominent journal, in October 2007 (see “Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability,” and “Nerve Sparing Ventral Clitoroplasty Preserves Dorsal Nerves in Congenital Adrenal Hyperplasia“).

They appeared online even earlier, in August 2007. The citations were included in the PubMed database, which is publicly accessible. So the news has been out there, for anybody to find and call attention to, for almost three years. But it didn’t cause alarm or outcry until Bioethics Forum, a project of The Hastings Center, brought the findings to the attention of a wider audience.

Another example of an awareness delay is the cervical cancer experiment in New Zealand, in which women with cervical carcinoma in situ were monitored instead of being fully treated (or informed of the lack of treatment), and many of them went on to develop invasive cervical cancer — most without ever realizing they were part of an experiment in the first place. (Here’s a slideshare presentation I did, explaining the experiment).

Initial “natural history” reports from this experiment were published in the medical literature in 1970, but there was little public attention or outcry until two women’s health activists published an investigation in 1987. In both cases, ethically problematic research was published but didn’t attract public attention or outcry for some years after the fact.

What can we do about this? Of course, many of us don’t have access to expensive journal subscriptions to read the full-text of such researchers’ questionable methodologies. We can, however, set up saved search strategies and alerts in publicly available citation databases (e.g., PubMed), and monitor the results for items that ding our warning bells.

There’s a lot of talk currently about e-patients (loosely defined as internet-savvy health consumers) with regards to researching medical conditions and treatments, but perhaps more activist-minded e-patients, and other online activists, should play a role in monitoring the broader biomedical research landscape. We know there are institutional review boards to monitor research on the front end, but what about research such as Poppas’s work, which is approved and published with little fanfare?

So, readers, what topics would you like to see in a search strategy set up to monitor these type of issues? What procedures or terms are always worth a review for the ethics and inclusion criteria? For example, I’d expect any research on prisoners should get a second look, and the combination of the clitoroplasty terms and the age groups in the Poppas citations might raise a red flag.

More broadly, how can women’s health and other human rights activists most effectively monitor the biomedical literature for ethical lapses and violations? I’m interested in hearing your ideas, and am happy to put my medical librarianship skills to work for better monitoring strategies.

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2 Comments

  1. Gina says:

    It is nearly impossible to keep abreast of what the medical profession gets up to with Intersex.

    nearly all of these articles are in Journals that are available to the It is nearly impossible to keep abreast of what the medical profession gets up to with Intersex.

    nearly all of these articles are in Journals that are available to the medical profession and academics. Organizations like OII have to pay $30 a view for each article. The journals do not provide pro bono access to organisations that Include the subjects of the articles.

    The behavior of the physicians involved in this procedure are participating in child sexual assault, pure and simple, the veneer of medical necessity and scientific inquiry should provide no immunity to this appalling behavior .

    The reporters, Dreager and Feder , rather decrying the activities in academic journals Intersex are unlikely to have access to , should have reported this to the police and the child welfare authorities.

    Both Dreager and Feder participated in the DSD consensus forum and Dreager invented the pathologising term Disorders of Sexual development to replace the word Intersex. The pathologising of Intersex differences was always going to lead to this kind of behavior by medical experts. Intersex was abandoned because the medical profession did not control the terminology or the protocols that surrounded various Intersex differences. Now with full control of both medicine is free to “cure” intersex and experiment , sexually, with infants to test the efficacy of those “cures”

    I call on Alice d Dreager and Ellen K Feder to declare the introduction of DSD a failure, to admit it has not stopped the unacceptable behaviors by the medical profession on Intersex individuals, it has not resulted in long term follow up studies as it called for and it has not improved the lot of Intersex.

  2. Rachel says:

    Gina – thank you for your comment, and I want to address one specific part of it. You’re right that access to articles can be expensive, especially if one is not affiliated with an academic institution. I have a couple of suggestions for you and others facing this same problem:

    -Check PubMed Central (http://www.ncbi.nlm.nih.gov/pmc/) to see if the journal/article is available there. Going forward, more things should be, as any papers resulting from projects funded by the NIH will have to be deposited there for free public access.

    -See if there is a medical library near you. For example, the medical library where I work is not completely open to the public for free, but individuals can purchase monthly access cards, visit the library, and copy or download anything we have a subscription to – the cost of a monthly pass is cheaper than one $30 article. Medical libraries at state universities typically are open to the public.

    -Check with your local public library – they may have a document delivery/interlibrary loan service that will let you get copies of specific articles much more cheaply than purchasing them directly from the journal.

    One thing I’m going to try to do is set up a good search strategy with alerts and share that with anyone who would like to monitor it for new citations on topics such as intersex.