Her colleagues still call her "the mistake." In late 2001, Jennifer Miller was on track to become a theoretical physicist. "My dream was to work for NASA and go to Mars," says Miller, who was then a senior at Fordham University. She was flying high--so high that when she received an e-mail invitation to speak at a 2-day stem-cell bioethics conference in Rome, she proudly agreed. She knew a little bit about stem cells, she says, and she figured that they wanted a young person's perspective. "I call it innocence, naïveté, hubris--I don't know." As she arranged her travel, rescheduled her final exams, and boarded the plane, she never had an inkling of the truth: The invitation was an error.
Miller attended the closed-door conference anyhow, thanks to an acquaintance who sneaked her onto the translator roster. She heard scientists, philosophers, theologians, and policymakers discuss cutting-edge stem cell technologies and their ethical ramifications. "I loved it," she says, but "I was unsettled." Who would have access to these new, lifesaving technologies--only the rich? Would the new technologies make the world a better place or more unjust? "An invention itself is good usually," she says, "but it's how we use it and apply it and distribute it that can cause some inequalities."
Today, Miller, 29, runs Bioethics International, a Manhattan-based nonprofit that helps the medical industry, including hospitals and pharmaceutical companies, grapple with everyday and exceptional ethical questions. Miller has organized a United Nations–affiliated conference and advised the American Medical Association. In the next year, she plans to launch an ethical-standards program for the pharmaceutical, biotechnology, and medical-device industries. With her innovations--undertaken with the same bold spirit, though less naïveté, as that first trip to Rome--she has earned her place on many podiums. "I don't think that science or business is for a timid person," she says.
Finding a niche
Miller returned from the 2001 conference intending to follow her original plan to go into physics. But then she received an e-mail invitation that was not an error: Based on her participation at the conference, the pontifical university Regina Apostolorum in Rome, which hosted the conference, offered her a scholarship to study in their new School of Bioethics for a year following her graduation from Fordham. She resisted at first, but a physics professor finally persuaded her to take the opportunity. Studying in Italian, a language she scrambled to learn in a summer course, Miller discovered that her physics training helped her work logically and methodically through ethical problems. In ethics, she says, "there are, just like in science, procedures for helping you reach a good conclusion. I never knew that."
Miller returned to the United States in 2003. At the time, few people had heard of bioethics. Her parents hadn't and worried that further study wouldn't lead to a viable career. "I'm superpractical," she says, so she decided to hedge: She'd work as a clerk in health care law at a firm in New York City, and she'd go to Rome four to five times a year to do intensive study toward a doctorate. That way, if things didn't work out, she could always parlay her ethics training into a career in health care law.
In her spare time, she started to develop a niche for herself in health care ethics. People called her for advice, referred by friends and family. She remembers advising a nurse whose blind patient refused hydration, a decision that would lead to the patient's death. Could the nurse just give the hydration through an existing IV without the patient's knowledge? No, Miller explained, because that would violate the patient's freedom to choose, which is fundamental to human dignity. "Then she understood, and then she was very at peace," Miller says. She says she probably could have run an ethics hotline for medical professionals, but "I thought the best thing I could do was empower them to make their own decisions."
First, she needed to build a framework for making ethical decisions that she could teach others. She reviewed all the philosophical possibilities--including utilitarianism, which promotes the "greatest good for the greatest number," principlism, and virtue theory, which are often taught in medical schools. She decided on the person-centered approach, created by Emmanuel Mounier in the early 20th century. Mounier's approach puts individuals at the center of decision-making, she says, "rather than whatever else would be tempting--like money, winning a war, or ideology." She finished building the framework at the end of 2006. In early 2007, she left the law firm and went to work full-time at her new nonprofit, Bioethics International.
The last thing to fall into place was Bioethics International's specialty. In early 2007, while working with the National Disaster Life Support Education Consortium of the American Medical Association, Miller met Anna Pou. Pou was a New Orleans doctor who was arrested but ultimately not indicted for second-degree murder after she gave lethally high doses of painkillers to critically ill patients in the days following Hurricane Katrina. Miller realized, and Pou agreed, that hospitals desperately needed ethics training for emergency situations.
At the time, flu pandemics were the emergency-preparedness “topic du jour,” she says. She developed a 1-hour pandemic training session for hospital staffs that used the person-centered approach to teach "the 'why' behind the 'what' " of standard triage protocol, which is designed to maximize the number of survivors. In a small exploratory study, Miller found that health care workers were more likely to use the protocol after the training than before. Recently, thanks in part to the increased attention to pandemics because of the swine-flu outbreak, she has partnered with the Harvard Humanitarian Initiative to expand that study. She hopes that more evidence on the effectiveness of ethics training will lead to more funding. "On a national level, people are always saying the word 'ethics,' but they need to start funding it better," she says.
A bridge between disciplines
In all her activities, Miller tries to act as a bridge linking the players in the bioethics world: science, law, philosophy, and religion. Each of those disciplines has tools that it can bring to bear on ethical questions, she says, to arrive at answers that everyone can agree on. "That's one of my driving forces," she says: "to try and build consensus and help people realize that these are human issues. These are not religious, ideological issues."
"This sort of interdisciplinary dialogue is essential," says Mark Mercurio, director of the Yale Pediatric Ethics Program. Last year, he spoke at a United Nations–affiliated conference that Miller co-organized about the ethical consequences of new medical technologies. It featured scientists, doctors, philosophers, and theologians--not unlike that first conference Miller attended in Rome. "There's an energy that she brings to this which is welcome," he says.
But not everyone is so open to her message of bridge building, Miller says. Her secret weapon is her youth: A petite woman with a small voice, at first she seems even younger than she is. It can disarm people long enough to get them to actually listen, she says. "I think [audiences] look at her initially as a young, inexperienced person," says Ferdinando Mirarchi, emergency department medical director at Hamot Medical Center in Erie, Pennsylvania. But once she starts talking, he says, "they begin to pay attention quickly."
Her latest project, the World Council for Ethical Standards, stems from the perception that the pharmaceutical industry puts profits before people--an accusation that's sometimes warranted and sometimes not, she says. Miller intends for the project to rebuild trust between the industry and consumers by creating a set of ethical guidelines for the pharmaceutical industry and related industries such as biotechnology and medical devices. Representatives from medicine, research, religion, philosophy, patient advocacy, law, and industry will sit on the council, which will give a seal of approval to companies that comply with the standards they develop.
The seal will encourage companies to act ethically, Miller says, and then inform the public when they do. She hopes to have it running within a year. That should also mark the end of her studies, because she is developing the seal's guidelines as her doctoral dissertation.
Miller is eager to tackle other ethical quandaries, including electronic medical records and artificial intelligence. She no longer has any doubt that her expertise will be in demand. She recently appeared as an expert on a local news station discussing the ethics of cloning and joined the advisory committee of a nonpartisan Washington, D.C., think tank, the Center for Policy on Emerging Technologies. These days, "everybody's calling for ethics reform--even on Wall Street," she says. "We're there."
Chelsea Wald is a freelance science writer in New York.