Does Your Average Scientist Need an Ethicist on Call?
Bioethicists are setting up consultancies for research — but some scientists question whether they are a necessity
Stacy Hodgkinson and Amy Lewin had the best of intentions when they enrolled the pregnant 15-year-old in their study. The psychologists were evaluating an educational program for young parents-to-be, and the teenager met all the inclusion criteria: she was 15–32 weeks pregnant with her first child, under 19 years of age, and her partner — who did not live with her — was willing to participate in the study. There was just one problem. Dad was 24 years old, and according to local laws he was guilty of child sexual abuse for sleeping with a minor.
The couple had apparently lied to each other about their ages, but not to Hodgkinson and Lewin, both then at the Children’s National Health System in Washington DC. This presented a dilemma. The scientists had promised the participants that their information would be kept confidential. But did that trump their legal duty to report the crime to the police? And how would that affect the family?
“Here was a young father telling us he’d like to be involved in his child’s life in a positive way,” says Lewin, who is now at the University of Maryland in College Park. Telling the authorities, she says, “could potentially do more harm than good”.
In search of moral and legal guidance, Hodgkinson and Lewin contacted Tomas Silber, a pediatrician who also runs a research ethics consultation service, a ‘one-stop shop’ for advice on thorny research issues.
To Silber, the course of action was clear. “There’s only one thing you can do,” he says. “You have to report it.” After explaining their legal obligations to the couple, Lewin and Hodgkinson told the police, who launched an investigation. The teen and her partner broke off contact with the researchers, and Hodgkinson does not know whether the father maintained a positive presence in the child’s or the mother’s life — which was ultimately the goal of their program. “Sometimes you do the right thing, but the consequences aren’t good,” says Silber.
Ethical dilemmas in research are nothing new; what is new is that scientists can go to formal ethics consultancies such as Silber’s to get advice. Unlike the standard way that scientists receive ethical guidance, through institutional review boards (IRBs), these services offer non-binding counsel. And because they do not form part of the regulatory process, they can weigh in on a wider range of issues — from mundane matters of informed consent and study protocol to controversial topics such as the use of experimental Ebola treatments — and offer more creative solutions.
The consulting services are “a really new area”, says Joshua Crites, a research ethicist at the Pennsylvania State College of Medicine in Hershey. “Even some of the most basic questions get complicated really quickly, and it’s better to have a group of ethicists working together to sort this out.”
But many scientists either do not know that they exist or fear using them because they could add red tape to an already heavy administrative burden. And this year, the US National Institutes of Health (NIH) scrapped funding for a working group to support ethics-consultation services and to develop best practices for the profession.
Although financial support could return in some form, ethicists are not waiting around for it. Benjamin Wilfond, director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital in Washington, has set up the Clinical Research Ethics Consultation Collaborative, a group of around 35 bioethicists who hope to keep improving the consultation service model, even without NIH support. “There’s energy behind continuing what we started,” says Holly Taylor, a research ethicist at the Johns Hopkins Berman Institute of Bioethics in Baltimore, Maryland, and a member of the group.