Welcome to Johns Hopkins Berman Institute of Bioethics
The Donors Have Spoken
by Ruth R. Faden and Anne Drapkin Lyerly July 2007 With the third veto of his presidency last month, President Bush rejected a bill designed to ease restrictions on federal funding for embryonic stem cell research using embryos that remain after patients have undergone infertility treatment.
At the center of the highly polarized debate is the single moral question of whether destruction of human embryos for research can be ethically justified. On one side are pro-life advocates, who are opposed to destruction of human embryos for any reason. On the other side are disease advocates and scientists, who argue that embryos that will otherwise be discarded should be used for scientific research that holds promise for the understanding of human disease and the relief of human suffering.
But amidst the controversy, a simple, critical fact has been lost. These embryos belong to people. They belong to men and women who created them in hopes of having a baby, and who often must decide what do with them when they conclude their infertility treatment. For many of these patients, deliberation about embryos is an unavoidable – and very personal – moral challenge. Some certainly hold the view that embryo destruction is a categorical wrong; others are moved by the promise of research. But all are forced to think about their embryos not just in terms of this very public debate but in the context of their own lives, their family, and oftentimes their revised understandings about what it means to gestate, parent, and love a child.
Over the last six years, we have listened closely to infertility patients. Our aim has been to understand how they have made decisions about the frozen embryos they created and over which they have legal authority and moral responsibility. Through a series of in-depth interviews and a survey answered by more than 1000 infertility patients with embryos currently stored, we learned much about the intersection of public policies and private lives.
In some ways, the views of infertility patients are similar to those of the American people, the majority of whom support stem cell research. Sixty percent of patients we surveyed indicated they would be likely to donate their unused embryos for stem cell research; nearly 40 percent said they were very likely to do so. It may be that for many individuals who must decide what to do with embryos, donation to research that could lead to cures for human disease or infertility serves a morally important purpose.
But it may also be more than that. In the survey, only six percent of infertility patients said they were very likely to donate their embryos to another couple. In our interviews, we heard something different and unexpected from the once intended parents of these embryos that helps explains this finding. In addition to the view that research was morally acceptable, patients often saw donation to research as morally preferable. These infertility patients articulated a different moral view than the views that dominate the policy debate. It was not a lack of reverence for embryos or their potential that made research or destruction attractive.
Rather, that reverence pushed in just the opposite direction: many articulated the view that they had a responsibility to the embryo that precluded their allowing it to become a child without their knowledge or participation. In fact, those contemplating research often expressed that what troubled them about donating their embryo to research was not a moral concern about embryo destruction but rather the worry that researchers would in fact allow the embryo to become a child.
Some will certainly criticize this viewpoint as not only morally wrong but also as the prudential if not selfish response of people who put their own interests in peace of mind above the interests of the embryo at a chance at life. Listening to these patients, however, we conclude otherwise. What we heard were people struggling to make sense of their procreative responsibilities to an entity whose promise they understood and respected but that they did not believe yet had an absolute claim to life.
The President has been heartily criticized on grounds that his stem cell policy has impeded progress in one of the most promising areas of biomedical science. In defense, White House Press Secretary Tony Snow counters that the policy is “not an attempt to muzzle science,” but “to respect people’s conscience on such an issue.” When we listen to the infertility patients who will decide about embryo disposition, it becomes clear that with respect to the people whose embryos are at issue – he is wrong on two counts. In addition to interfering with one of the most promising avenues for regenerative medicine, restrictive policies fail to respect the consciences of the majority of the people most intimately connected to embryos.
Anne Lyerly, M.D., is an associate professor of obstetrics and gynecology at DukeUniversity. Ruth Faden, Ph.D, is director of the Johns Hopkins Berman
Institute of Bioethics.
Who Pays to Stop a Pandemic?
By Ruth R. Faden, Patrick S. Duggan, and Ruth Karron February 2007
BIRD flu has not yet turned into a pandemic, but it is already killing the meager hopes of some of the world's poorest people for a marginally better life.
When poultry become infected with the deadly strain of avian influenza (H5N1), it is essential that all birds nearby be culled to prevent further spread. We all stand to benefit from this important pandemic prevention strategy, recommended by the World Health Organization and the United Nations Food and Agriculture Organization. Unfortunately, however, the world's poor are unfairly shouldering the burden of the intervention.
Last month officials in Jakarta, Indonesia, announced a ban on household farming of poultry there. The domestic bird population of Jakarta is estimated at 1.3 million. Thousands of families were given until Feb. 1 to consume, sell or kill their birds. Now inspectors are going door to door to destroy any remaining birds.
The Indonesian government pledged to pay about $1.50 for each bird infected with the H5N1 virus, a sum that may approximate the bird's fair market value. But most birds that have been killed under this policy are healthy, so their owners, most reports suggest, will receive nothing.
Moreover, it is not clear how Jakarta's poor will replace the income they once received from chickens and other birds. When officials impose widespread culling, industrial-scale poultry producers -- like the company that owns the large British turkey farm where bird flu was found this month -- usually have the resources to absorb the losses. But when the birds of small-scale poultry farmers are culled, entrepreneurs who were just beginning to move up the development ladder can be plunged right back into poverty. The most dependent and vulnerable members of the community become even more dependent and vulnerable. ''Backyard birds'' are the only source of income for many women and children.
Families whose birds are found to be infected with the virus may suffer even more. People in Cambodia, China and India whose poultry have been blamed for avian influenza outbreaks have often been subject to extreme stigma and isolation, and there have even been reports of suicides by desperate farmers. It is inevitable that the world's poor will suffer most from a pandemic. A recent article in The Lancet predicted that if the next pandemic were to mimic the huge 1918 flu outbreak, 96 percent of an estimated 62 million deaths would occur in developing countries. But specific steps can and should be taken now to prevent or mitigate the injustices that are already occurring.
We are part of a group of 24 government officials, public health experts and scientists from 11 countries who recently met in Bellagio, Italy, with the support of the Rockefeller Foundation to call attention to how pandemic planning affects the world's disadvantaged. We created a checklist for avian influenza control that explicitly calls on the authorities to compensate people who suffer losses from bird-culling programs, regardless of whether the destroyed birds are infected with the avian influenza virus.
Such a program in Jakarta alone would be expensive. Just to compensate families for their culled birds would require nearly $2 million, not including the cost of administering the program. Indonesia's domestic bird population countrywide is estimated at 300 million, so if the culling program were to be expanded beyond Jakarta, the total compensation cost could run as high as $450 million.
Indonesia's avian influenza budget for the coming year is reported to be less than $50 million. Clearly, without donor assistance, the government cannot afford to compensate families and farmers fairly. So the burden of pandemic prevention must also fall on the world's wealthy nations. Last year, the United States, the European Union and other nations pledged more than $2 billion to the global war chest for avian influenza response. Developing a program to compensate poor families in countries with limited resources is an enormous challenge. But it is time that the money pledged by the donor countries reach the people who are already the first victims of the next pandemic.
Ruth R. Faden is the executive director and Patrick S. Duggan is the research coordinator of the Johns Hopkins Berman Institute of Bioethics. Ruth Karron is the director of the Center for Immunization Research at the Johns Hopkins Bloomberg School of Public Health.
Johns Hopkins Berman Institute of Bioethics
| 100 North Charles, Suite 740
Baltimore, MD 21201 |
Office: 410-516-8500 |
Fax: 410-516-8504
