Forced Sterilisation in Namibia

The BBC reported this week that three women in Namibia are suing the state for performing a sterilisation without consent. There appears to be some uncertainty about the degree of force because of difficulties during consultation. A legal representative remarked that procedures are not always discussed clearly and the eleven indigenous languages create, at times, a language barrier. The women have been protesting and carrying placards which state “My body, my womb, my right”. 

Now, for the next crucial point: these women were sterilised following a positive diagnosis of HIV. Coming from a society (UK) that promotes individual autonomy and truth-telling to patients to its greatest extent, it is easy to jump on the bandwagon and start pointing the finger at the accused doctors for their wrong-doing. Forced sterilisation has been reported in other countries, particularly post-Communist countries such as Albania and the Czech Republic. It has been difficult to carve out the image of autonomy from a history that denied individuality. But Namibia has a different twist. I can only surmise that the goal for preventing future pregnancies of these women is to halt this method of potential transmission of the HIV virus.

In a country where HIV/ AIDs is the leading cause of death, and the National Demographic Health Survey (2006) estimated close to 17% of children under the age of 18 have been orphaned by at least one parent, the medical community – as well as society – must be close to despair. Does this make a doctor’s action to perform a sterilization on a HIV+ woman who may have not consented with capacity and competence, or not consented at all, any easier to understand?

Is it a utilitarian ethic to prevent the potential future suffering – medical and social – of a family – and is a doctor the right person to instigate such practices? First of all, HIV is a manageable chronic condition in Western countries, but with the lack of accessibility and availability of medication along with other factors specific to a country, HIV is a death-sentence.

Is managing birth a way of managing disease? Truth and trust often go hand-in-hand. What are the implications for Namibian women and the countries medical system? It appears that the sterilization of these three women, forced or not forced, is raising questions about how must medicine respond to dire threats to human life, and moreover, cutting the cord of trust between a doctor and a patient terminates a part of the system of society.

News of Note this past week

~ Gender disparities persist in treatment of stroke. Guess which direction this one cuts.

~ TANSTAAFL: Pfizer to disclose payments to doctors, researchers starting in 2010. All right, let’s hear it!

~ Second Stryker sales rep pleads guilty to misbranding a medical device. A

felony.

~ Ovaries can be safely saved in some endometrial cancers.

~ 9 flawed genes found in risk of heart attack. Ah, the plot thickens!

~ Are you what you eat?: Mediterranean diet could cut risk of dementia. Quick! Get me some fish and olive oil.

~ Bone drugs may help fight breast cancer. Nice added benefit.

~ Damaged spinal cords in mice improved by transplants of neural stem cells produced with human induced pluripotent stem cells. We can rebuild them .

~ Are fears over bioterrorism stifling scientific research?

~ Naturally occurring brain protein may slow or stop the progress of

Alzheimer’s.

~ Gene therapy offers hope of cure for HIV: bone marrow transplant breakthrough.

~ GM goats raised to produce human breast milk. Just had to include this

story, in light of the one right below!

~ FDA approves drug made in milk of genetically altered goats. This is the first time such a drug has been approved. They also looked back at 7 generations of the goats to look for adverse effects on the animals.

~ Epilepsy group asking lawmakers to prohibit pharmacies from switching prescribed meds to generics amid reports of increased seizure incidence with generics over brand name epilepsy meds. Hmmm . . .thought generics were supposed to be bioequivalent. Seems that is not always the case!

~ Wacky names for newly discovered fruit fly genes. Examples? “Cheap Date,” “I’m not Dead Yet” (otherwise known as INDY). Who said scientists have no sense of humor?

[Thank you to Lisa von Biela, JD candidate, 2009, UMN, Editor of the BioBlurb, from which this content is partially taken and edited. BioBlurb is a weekly electronic publication of the American Bar Association's Committee on Biotechnology, Section of Science & Technology Law. Archived issues of the BioBlurb, as well as further information about the Committee on Biotechnology, are available here.]

(Still) Wanted: A Female-Controlled Method to Prevent HIV

Twenty-seven years after AIDS was first diagnosed among gay men in California and New York, HIV/AIDS has become a health threat borne disproportionately by women in the developing world. Globally, there are twelve HIV-positive women for every ten HIV-positive men. In the hardest hit countries in sub-Saharan Africa, young women are three times more likely than their male peers to become infected.

The disproportionate impact of HIV on women is due to a variety of biological and socioeconomic factors. Many of those factors make today’s HIV prevention options – condoms, mutual monogamy, and male circumcision – inaccessible to women at greatest risk of infection. Many women do not have the social or economic power necessary to insist on condom use and fidelity or to abandon partnerships that put them at risk, and a recent study from Uganda shows that circumcision does not protect female receptive sex partners. There thus is a desperate need to develop new tools to enable women to protect themselves, including microbicides.

This morning, the Population Council posted the results of a phase III effectiveness study of a candidate microbicide called Carraguard, an odorless, clear gel made from carrageenan. Over 6,000 women in South Africa volunteered to be part of this clinical trial, in which participants were randomly assigned to either receive Carraguard or a comparator gel. Trial participants were instructed to use the gel plus condoms every time they had sex, and asked to return to the study clinic repeatedly over a two-year period. During this time, they were provided with condoms and received comprehensive risk reduction counseling, HIV testing, and screening and treatment for STIs.

Unfortunately, trial results showed that the product was safe and acceptable to women, but did not reduce their risk of acquiring HIV.

Twelve other candidate microbicides are currently in human trials, and a new generation of antiretroviral-based products is entering the development pipeline. But developing and testing these compounds is a time- and resource-intensive process, and many policymakers have begun to question whether or not limited public health resources are better used to promote proven prevention technologies like condoms.

This, I believe, is short sighted. For the reasons mentioned above, proven HIV prevention technologies will not protect at-risk women. Furthermore, drug development is always a long term struggle, with dozens of failed products for every one that makes it to market.

As disappointing as these results are, the fact that the trial reached completion is itself a breakthrough. Successful completion of the Carraguard trial is a testament not only to the commitment of the study investigators but also to the dedication of the trial participants themselves.

Regardless of the results, this trial will yield important information about microbicide effectiveness, safety, use, and acceptability, and will help researchers design and test new HIV prevention technologies.

Mandatory HIV testing for pregnant women in New Jersey

AP reports that New Jersey has passed a law that establishes a mandatory, opt-out program for testing pregnant women (and newborns at risk) for HIV.

New Jersey has about 17,600 AIDS cases, according to the Kaiser Foundation. Women represent 32.4 percent of the cases — the third highest rate in the nation. The national average is 23.4 percent.

The state has about 115,000 births per year and had seven infants born with HIV in 2005, according to state health department officials.

Bloomberg also reports:

Health-care providers will test pregnant women for HIV, the virus that causes AIDS, in their first and third trimesters unless they refuse, according to the new law. Newborns whose mother's HIV status is positive or unknown at the time of delivery also will be tested.

The rate of mother-baby HIV transmission has been dramatically reduced due to increased testing and preemptive actions:

The number of children in the U.S. reported with AIDS attributed to HIV transmission during childbirth declined to 48 in 2004 from a peak of 945 in 1992, primarily because of the identification of infected pregnant women and the effectiveness of preventative drugs in reducing mother-to-child transmission, according to the CDC report.

Some questions for consideration:

* Does a woman's right to informational privacy outweigh the state's interest in preventing HIV transmission to newborns?

* Does the incurable nature of HIV lend more weight to the latter?

* Does a woman cede certain personal rights when she decides to carry a pregnancy to term?

* On a finer point - which is more desirable in this circumstance: "opt-in" or "opt-out"?