Up at 5AM: The 5AM Solutions Blog

A Special Kind of Patient Philanthropy

Posted on Thu, Mar 01, 2012 @ 06:00 AM

Personal Philanthropy WorksIt was recently announced that the Cleveland Clinic and 23andMe are teaming up to seek out volunteers for a study where patients will be asked to provide a saliva sample for DNA analysis and agree to participate in online surveys about their experience with Parkinson’s Disease to study the interactions between genomics and the disease. I wondered, how powerful is the draw of this kind of personal philanthrophy, when the donation (be it a donation of tissue or participation) is of the self rather than of the pocketbook? And to arrive at such a decision, what are the motivations, reservations, and implications?

To Give or Not to Give?

When someone donates tissue in a medical scenario--especially for the more celebrated and perhaps, glamourous donations, including organs (post-mortem or living) or other accute life-saving materia--they feel good about doing it. Likewise, when someone participates in a study, they have the indirect reward of speculating they likely helped science to go to war against diseases that plague their fellow humans. Donors in both scenarios feel good about what they did, and research organizations today cross their fingers that this warm-fuzzy psychological motivator will be enough. With a growing focus on transparency and permission-based procurement, this opt-in approach differs a great deal from how samples have been gathered in the past, presenting research with challenges to encouraging participation. Certainly the most famous case of "old school" tissue acquisition can be found in the much-publicized case of Henrietta Lacks, where cells were harvested and utilized for years without permission/consent—unethical by standards of today, but with amazing, medical history altering results. But what else motivates participants? Several studies (including http://jop.ascopubs.org/content/7/5/334.full) have been conducted on the psychology behind motivations for personal philanthropy and the themes are consistent. Individuals participate and donate because they:

  • Want to help improve the human condition (broad view)

  • To help ease personal pain of loss to focus energy at a specific disease

  • It presents viable way to “give” in the absence of financial resources        

And in critical contrast, the typical reasons why individuals opt out most often include:

  • Fear that anonymity would not be upheld

  • Spiritual or religious beliefs that are not aligned with medical science

  • Fear of compromising the donor’s own diagnosis (where applicable)

  • General anxiety over the process of donation

  • Concerns over exactly what their genetic material might be used for (now or in the future)

As we develop the scientific tests and the software needed to exponentially speed up the discovery cycles that see the light through all of the data, the larger the sample size the more confident we can be in the results. So how do we overcome the objection hurdles for the average Joe, and net more participants across the board?

Show me the money?

In this strained economic environment, I can’t help but wonder if adequately compensating participants/tissue donors by either direct payment, through tax credits/deductions, or even making additional financial donations to selected non-profits in their name would provide the necessary incentive to outweigh most of the objections, and increase the participant pools to be as deep as we need them to be. Participating in studies is an easy kill when it comes to showing people the money--many research studies are already set up to pay folks for participation. But from a legal standpoint, the National Organ Transplant Act currently prohibits payment for organs, and the FDA prohibits payment for blood donations in many scenarios (but has more flexibility in others, specifically for the use of plasma). However, a recent regional judgment (Flynn vs. Holder) has blurred the defining lines between "organ" and fluid, expressing that the particular procedure of the marrow donation dictates the legal disposition, ruling that in some extraction cases bone marrow no longer falls under the NOTA and compensation can be given. There is so much grey area! But there is also a certain social stigma between this most personal of philanthropy acts when it comes to compensation: Some feel that when you are compensated vs. truly "donating" that it is not philanthropy at all (at least not by definition). A recent article in Philanthropy Daily explores this complicated issue relative to increasing bone marrow donations.

Does receiving compensation make the effort any less altruistic or admirable? Does it encourage people to become living tissue farms, selling off part and parcel to the highest bidder? If you have ever donated tissue, what was your motivation? Would you donate tissue were you to be compensated?

-Kristi Woods, 5AM Solutions

Feeling generous? How to donate biospecimens:



Tags: personal philanthropy, tissue donation, organ donation, study participation, biospecimens, 23andMe, Parkinson's Disease, Cleveland Clinic


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