Linda Wright briefly explains “hoped-for” GeneSetMatch technology and highlights problems for informed consent and public trust.
Progress requires imagination. New ideas on how to find more organs for transplantation bring welcome hope of extending more lives. Some initiatives use science to improve the medical acceptability of more organs, whilst others, such as social media, reach out to more people to increase the chance of finding more organ donors.
Organ donation cannot succeed without public trust. Recent controversies about unfair access to transplantation by those using social media to find donors has had a negative impact on the public’s perception of the transplant system. This strategy has also found suitable organs donors, however.
GeneSetMatch is a new research idea. The developers hope to apply science and bioinformatics to explore possible ways of using facial recognition to find living organ donors. They want to develop software to link facial features with HLA types. The goal is to identify persons likely to have immune system genes that match someone who needs an organ transplant. This technology could potentially identify more potential living donors. As living donation is the best treatment for most people needing a kidney transplant, this could be exciting.
Simultaneously, the technology being developed by GeneSetMatch raises interesting questions about how people relate to each other, and about the application of science in the modern world. Will this technology (or something similar) be seen as a major breakthrough? Or, will such technology result in another controversy similar to that with the use of social media to find organ donors? Taken together, what is the probability that organ donations will increase, and that public trust will decrease?
Organ donation from one living person to another is a practice firmly rooted in altruism. The informed consent of the organ donor is critical in establishing the ethical acceptability of subjecting a living person to the potential harms associated with organ removal. Without the certainty of a living donor’s free and informed consent, the act of organ procurement constitutes a battery in law and contravenes ethical standards.
In an effort to ensure voluntarism, many transplant programs refuse to contact potential living donors directly. They insist that potential donors make the initial call to the hospital. This strategy aims to ensure that donors are not acting under pressure from anyone else. Throughout the evaluation process for “matching”, best practice calls for all potential donors to be well informed of potential risks to themselves and assured that a decision not to donate will be respected without judgment by the assessment team.
One challenge with the “hoped-for” GeneSetMatch technology is a person would be targeted as a potential organ donor by someone they do not know. This is different from the use of social media to identify a potential donor where there is a public announcement or plea for an organ or tissue (such as bone marrow). This strategy makes people aware of a need. People are free to decide if they want to offer to donate or to ignore the plea. GeneSetMatch changes the landscape by enabling people to contact that person to check on their willingness to be tested as a possible match.
A potential benefit of GeneSetMatch technology is that this could reduce the number of people who undergo tissue typing for potential organ donation. This would save time and resources, which is all very positive. However, use of this technology would change our current approach to organ donation by actually looking for individuals and informing them of their suitability to donate to someone.
What safeguards would protect identified potential organ donors from undue pressure or even nefarious activities? If a parent posts a photograph of their child’s birthday party on Facebook might someone identify the birthday girl or one of the party guests as a potential organ donor?
Technology creates possibilities and can enable progress. Our challenge is to develop adequate safeguards for its responsible use. The current organ donation program depends on public trust. For living organ donation to remain a voluntary act, protections need to be in place so that if GeneSetMatch identifies potential matches accurately, the voluntariness and privacy of personal health information is protected. Further, transplant programs will need to strengthen evaluation processes, particularly around psychology and ethics, to ensure that only the willing are accepted as living donors.
Linda Wright is a Toronto bioethicist who specializes in the ethics of organ and tissue donation and transplantation.