A summer fad raises questions of good research and fundraising practices

 

For many, the Ice Bucket Challenge was a fun way to keep cool and connected with out-of-state friends over the summer, all while raising awareness about a degenerative disease.

The challenge is an effort to support those with Amyotrophic Lateral Sclerosis (ALS) by daring nominees to video tape themselves being doused with a bucket of ice water, or donate money to the ALS Association.

It seemed that not a day went by without ice buckets flooding one’s Facebook newsfeed.

However, some declined to participate due to concerns that the ALS Association conducts embryonic stem cell research, which is contrary to Catholic teaching.  In section 4b of the Charter of the Rights of the Family, the Holy See writes, “Respect of the dignity of the human being excludes all experimental manipulation or exploitation of the human embryo.”

Margaret Cross, a sophomore in the Mendoza College of Business, said, “I was challenged very late in the arc of the fad, so there were already many questions being raised about the ALS Association’s research practices.  Having heard these things beforehand made me decide to decline the challenge.”

Though donating directly to embryonic stem cell research is contrary to Catholic teaching, is donating to an organization that may be involved in embryonic stem cell research also wrong? Gerald P. McKenny, Walter Professor of Theology, discussed how there can be more than one degree of “entanglement in evil.” He explained:

“Perhaps you contribute to an ALS foundation and that helps keep the organization running … but your contributions are going to a separately administered unit.  [This would be] mediate material cooperation with evil, not immediate cooperation … you are not intending evil or directly contributing to it, but you are doing something that helps an enterprise that–in addition to the good to which you are directly contributing by your donation—does evil [stay] in business.

“The Catholic tradition, and the practice of many Catholic dioceses that approve arrangements between Catholic hospitals and secular hospitals that do sterilizations and provide contraceptives is that this kind of involvement with evil can be justified in principle, though in practice it may not be justified if there are alternatives, or if it would likely cause scandal, leading people to conclude that there is really nothing wrong with the morally illicit activity.”

At least one diocese, the diocese of Richmond, has written a letter asking its members to donate to research institutions other than the ALS Association.  The letter explicitly suggested the John Paul II Medical Research Institute, which is committed to upholding pro-life values.

In addition to life issues, others have expressed the concern that all the hype for the ALS campaign is diverting funds from equally if not more worthy causes.  Celia Deane-Drummond, Professor of Theology, stressed the importance of proportionality of donations.

“I’m suspicious of media hype around causes that channel excessive funds a certain way, when there are even more devastating diseases, suffered by greater numbers of people in the poorest regions of the world, where lives could be saved for a tiny fraction of the cost,” she said.

She further stated that though the challenge has created an avenue through which “the collective consciousness can act, what we need is a collective conscience, which thinks about the moral issues involved instead of mindlessly joining in the fun.”

Deane-Drummond continued, “It is important to ask what kinds of virtuous expression [the challenge] produces.  Although it is a good thing that people are being encouraged to care about others who are suffering, it does not seem a particularly significant part of the challenge.”

She added that though the challenge is an admirably imaginative way of raising money, it is easily abused; it starts an “emotional chain reaction” to join in, and “the ice bucket challenge has also been used to bully—people have been pressured into participating.”

Although to many the Ice Bucket Challenge merely presented a fun opportunity to participate in social activism this summer, it has also raised awareness on issues such as ethical research and donation practices.  In addition to the question of whether one wants to support a particular cause or not, other considerations include research methods, how important a certain cause is compared to others competing for donations, and whether or not a fundraising movement uses commendable tactics.

 

Maya Lewis is a sophomore biology and music major who makes elderberry syrup in her spare time (what she has of it).  If you would like to join her in a berrying expedition, contact her at mlewis12@nd.edu.