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Enough doubt has been cast on whether donations made to the ALS foundation will be used in human embryonic stem cell research that many Catholics are deciding not to take the "Ice Bucket Challenge."
At least one local Church has cautioned its faithful to avoid the campaign.
The Archdiocese of Cincinnati has asked principals at its Catholic schools not to encourage students to raise money for the ALS Association as the ice-bucket challenge becomes an internet sensation, according to Cincinnati.com.
Amyotrophic Lateral Sclerosis, "often referred to as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord," according to the ALS Association. "With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed." About 30,000 Americans have the disease.
The archdiocese doesn’t want donations to be sent to the ALS Association, which funds at least one study using embryonic stem cells, said Dan Andriacco, spokesman for the archdiocese. Instead, it suggested sending any money raised in the Challenge to the John Paul II Medical Research Institute in Iowa City, where the research is only conducted using adult stem cells.
Now, at least one bishop has taken up that challenge. Bishop David Zubik of Pittsburgh agreed to get doused, but he’ll be writing a check to the John Paul II Institute, according to the Pittsburgh Tribune-Review,
Alan Moy, M.D., vice president of the John Paul II Institute, outlined their scientific objectives for ALS research, in an email to Aleteia.
"We would try to conduct the following objectives depending on the level of funding that we received," he said.
2. Develop stem cell models of these patents from these tissues—i.e. create “disease in a dish” personalized cell models that can be used to screen experimental drug compounds created around the world and/or drugs that we would design. These cells are created free of human embryos or aborted fetal tissue.
3. From #2, identify the best lead drugs that cure the “disease in a dish” in an ALS patient. Our theory is that if it cures the patient’s disease in a dish that it may have a chance of effectively treating the patient in a clinical trial. The failure rate of drug development and clinical trials for neurological diseases is very high (90 percent). Not withstanding the ethical issues of embryonic stem cell research, more cost effective and efficient ways of achieving success are needed. We think this approach has potential because it worked in two siblings with a fatal genetic-based neurodegenerative disorder.
Bishop Zubik is taking the challenge on behalf of Father Dennis Colamarino, pastor of Christ the Light of the World and St. Joseph’s parishes in Duquesne. Father Colamarino was diagnosed with ALS a year ago.
After an 11 a.m. Mass on Saturday at Holy Name Church of Christ the Light of the World Parish, police will close South First Street in Duquesne, and the bishp and the pastor will be doused with ice and water.
“I see this as an opportunity to give back some of the love and support that I have received over the last 15 months,” Father Colamarino said in a prepared statement.
A spokesman for the Diocese of Pittsburgh defended the bishop’s decision not to donate to the ALS Association.
“We are aware of the ALS Association and how it uses — at least in one of its areas of research — embryonic stem cells,” said Father Ronald Lengwin. He said the John Paul II Institute “uses a variety of adult stem cells to find cures and therapies for various diseases…. They do not engage in embryonic stem cell research of any kind.”
He declined to say how much the bishop was contributing.
On its website, the National Catholic Bioethics Center cautioned that the ALS Association "advocates for human embryonic stem cell research, including through funding for specific research projects."
"As indicated in the Advocacy Archive section of their website, they were active in encouraging expanded funding for embryonic stem cell research as soon as President Obama took office," the NCBC said, quoting from the ALS Assocation: “Earlier this month, the Coalition for the Advancement of Medical Research, of which The ALS Association is an active member, sent a letter to President Obama urging him to quickly to lift the restrictions on embryonic stem cell research.”
In the midst of the controversy, the ALS Association has said that it 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)," Carrie Munk, a spokeswoman for the ALS Association, said in an email to Religion News Service. "This research is funded by one specific donor, who is committed to this area of research. The project is in its final phase and will come to an end very soon.”
Commented the National Catholic Bioethics Center: "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."
The organization suggests that people inform organizations like the ALS Association of their decision to donate to an alternative and to explain why they are doing so.
The NCBC also lists a number of other groups who support morally licit forms of research.