Assisted reproduction survey fills a void in the literature
With nearly half a million biomedical journal articles published worldwide every year, it's pretty rare for a researcher to find a topic on which there is not a single scrap of published data. But that's just what happened recently to Judy Stern, Ph.D., director of DHMC's Human Embryology Lab.
Stern and several colleagues were teaching a multidisciplinary undergraduate course on the ethics and science of assisted reproduction—the provision of services to individuals or couples who are infertile or face some other difficulty getting pregnant. The team believed that access was an important area in the field and one that presented numerous ethical quandaries. For instance, should clinics be able to deny services to people who are HIV positive, who use illegal drugs, or who have a history of abusive behavior? To accept only married couples? To limit how many times a given patient can use their services? Stern, an associate professor of obstetrics and gynecology and of pathology, knew that the DHMC program was already grappling with questions like these.
Void: As she and the other faculty for the course—psychologist Catherine Cramer, Ph.D.; education professor Andrew Garrod, Ed.D.; and ethicist Ronald M. Green, Ph.D.—were developing the syllabus, however, they found no published information on the topic of access. "There was absolutely nothing out in the literature on it," says Stern. She has since been working to fill the void.
She feels the issue of access deserves special attention in the context of assisted reproduction, because it is different from other areas of medicine. "First of all, infertility care is elective, so you're dealing with a situation where . . . [patients] are not in a state of being critically ill." This changes the physician's obligation to treat regardless of the behavior of the patient. Second, Stern points out, "what we're doing results in the birth of a baby." This sounds simple, but it creates a complicated obligation for the provider of assisted-reproduction services. Stern likens it to adoption and argues that providers have a responsibility to be aware of the family dynamics they are helping to create.
The first step, Stern and her colleagues decided, should be to assess the current state of practice, so they designed a survey and sent it to 324 assisted-reproduction clinics nationwide.
Survey design: The survey was broken into five parts. The first asked whether the clinic had a written policy covering access and if so how it had been formulated. The second queried their actual handling of various types of cases—for example, whether they treated unmarried women, lesbians, people with a history of drug or alcohol abuse, or women over a certain age. The next section explored the individual provider's personal feelings on these same issues. The fourth presented a series of case studies. And the last section covered demographics.
Variation: Stern and her colleagues garnered a 57% percent response rate, with wide geographic distribution. They found that many clinics do not have formal policies on access to service. In fact, only 44% had any kind of written policy at all, and 30% of those that did said they don't always follow their own policies.
As for actual practices, Stern found little consensus. Seventy percent of respondents do provide services to unmarried couples, unmarried women, and lesbian couples. But this was the closest to unity that the respondents came. "Many of the questions had a lot of disagreement, where some clinics will treat, some clinics won't treat, and some clinics throw up their hands and say, 'We don't know what to do with these patients,'" Stern reports.
Judy Stern was amazed to find not a single journal article on access policies at assisted-reproduction centers —so she and colleagues set out to fill the gap.
"One of the things this [variability] means to us," she explains, "is that clinics need to do a little more talking as a profession . . . and bring some of these kinds of cases out into the open." Stern hypothesizes that the profession has avoided discussing access because it is a "socially frightening" topic. But, she points out, clinics are already making de facto decisions.
"The other thing we found that was very interesting," Stern adds, "is that pretty much on a question-by-question basis . . . the opinions of providers were more restrictive than their clinic policy." This means that a number of doctors are practicing in ways that they are not personally comfortable with. Stern believes that this is because our society has a history of "really [respecting] autonomy and telling people they can do what they want" and is one reason why there's resistance to even discussing limits on patient choice. In addition, these are issues about which people have strong and often opposing feelings.
Discussion: Stern is adamant, however, about the need to bring a broad spectrum of people into the consideration of these issues —including patients, providers, ethics experts, legal experts, and members of interest groups. The profession itself is very homogeneous—the respondents to the survey were 79% male, 87% Caucasian, and 85% Judeo- Christian—and this concerns Stern. The providers "are coming from a very similar perspective," she says, "and other perspectives are needed." She hopes that more discussion will facilitate the development of ethical and legal standards, even if it doesn't bring unity. "I don't think we'll ever get consensus in this society on these issues. But the goal is to have enough discussion to be aware that there are other opinions out there and to be aware of what they are."
The survey has led to at least one improvement at DHMC. Stern and her colleagues have since developed a written policy for the DHMC assisted-reproduction program. The policy serves as a guideline that a committee applies to specific cases. The policy is also shared with interested patients. This openness is another important step, says Stern; she feels patients should be made aware that clinic policies may vary and that they have a right to choose among different clinics.
"Right now what's happening is individual clinics are sort of making their own little decisions without input from anywhere," says Stern. "If there's a more general discussion, we can really talk about what the ethics of this are and what the legal side is."
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