After considering the matter at length, the National Catholic Bioethics Center announced its official stance Aug. 22 regarding the Ice Bucket Challenge used to promote awareness about ALS.
The challenge aims to raise awareness for amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. According to the ALS Association (ALSA) website, here is how it works: The challenge involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness. People can either accept the challenge or make a donation to an ALS charity of their choice, or do both.
There is nothing morally problematic about the nature of the challenge. Accepting the challenge does not require any donations, but helps promote the primary goal of raising ALS awareness. Those declining the challenge are encouraged to “make a donation to an ALS charity of their choice,” but there is no legal or moral obligation to do so, nor is there any requirement that a donation go to ALSA.
Since the challenge started trending in late July 2014, it has generated more than $40 million in donations to promote research into causes of ALS and the development of new treatments.
ALSA has been the primary recipient of many if not most donations resulting from the challenge. ALSA has also helped to promote the challenge on its website and through social media in accordance with its good aims as a charitable organization.
The public attention and funds being directed toward ALSA as a result of the Ice Bucket Challenge raise an important moral concern: ALSA advocates for human embryonic stem cell research, including through funding for specific research projects.
In its Instruction Dignitas personae, the Congregation for the Doctrine of the Faith speaks clearly to the moral problems with the use of embryonic stem cells:
The obtaining of stem cells from a living human embryo … invariably causes the death of the embryo and is consequently gravely illicit: “research, in such cases, irrespective of efficacious therapeutic results, is not truly at the service of humanity. In fact, this research advances through the suppression of human lives that are equal in dignity to the lives of other human individuals and to the lives of the researchers themselves. History itself has condemned such a science in the past and will condemn it in the future, not only because it lacks the light of God but also because it lacks humanity” (n. 32, quoting Pope Benedict XVI).
ALSA acknowledges ethical concerns surrounding the use of embryotic stem cells: “The discovery that human embryonic stem cells can be isolated and propagated in the lab with the potential of developing into all tissues of the body is a major medical breakthrough. But it has raised ethical concerns.”
When asked about the ALSA position on human embryonic stem cell research, Carrie Munk, a spokeswoman for the association, noted in an e-mail to Religion News Service that the organization primarily funds adult stem cell research:
“Currently, the association is funding one study using embryonic stem cells (ESC), and the stem cell line was established many years ago under ethical guidelines set by the National Institute of Neurological Disorders and Stroke (NINDS); this research is funded by one specific donor, who is committed to this area of research,” she said. “The project is in its final phase and will come to an end very soon.” The organization does not clearly rule out the prospect of funding for ESC research.
Potential donors seeking to support laudable causes, such as research for cures to serious diseases, face the challenge of exercising due diligence, so that their funds are properly utilized and not misdirected or otherwise targeted by an advocacy organization to support immoral projects.
When foundations have a generally sound list of activities but promote an intrinsically immoral activity as well (such as abortion, human embryonic stem cell research, or contraception), donors must consider the serious matter of the fungibility of donated funds. Whenever we participate in fundraising for such organizations, even if they assure us that specified funds will only be used for activities with an ethical profile, it can end up being little more than a shell game. In this sense, there is a real danger that our fundraising activities may not only engender scandal, but may even contribute to the perpetuation of grave evils like abortion and human embryonic stem cell research. The duty to affirm the dignity of human life, and associated questions of scandal resulting from a lack of clarity, can become more significant — with a corresponding need for caution about where the funding is going — when Catholic authorities or institutions such as dioceses and schools are involved.
Donors concerned about the misuse of funds by groups such as ALSA or others should consider notifying those organizations of their reasons for choosing not to donate, encouraging them to cease advocacy and funding for ESC research, raising awareness about the immoral destruction of human life through embryonic stem cell research, and donating to alternative ALS research and advocacy groups that do not support or promote human embryonic stem cell research.
(The National Catholic Bioethics Center is a non-profit research and educational institute committed to applying the moral teachings of the Catholic Church to ethical issues arising in health care and the life sciences.)
