Dan Orenstein, Deputy Director at the Network’s Western Region, recently co-authored the Annals of Health Law article “Flipping the Light Switch: New Perspectives on Default to Donation for Organs and Tissues,” which explores the policy of presumed consent in organ donations. In this Q&A, he gives an introduction to his article and how it addresses an issue that impacts public health.
Q: Can you explain presumed consent and its importance to organ donations?
Dan Orenstein: Our current consent system for organ and tissue donation in the U.S. is an “opt-in” system. Unless a person registers as a donor before death or makes his or her wishes explicitly known, it falls to the family to make decisions about whether the person would have wanted to donate. This is a very difficult assessment, especially for a grieving family. They may often feel unsure about what the person may have wanted and family members may disagree. The opt-in system compounds the difficulties because it makes non-consent the default and implies that non-consent is the conservative choice.
A little over 40% of donors are registered, but some surveys show as high as 95% support for donation. Presumed consent (or “default to donation”) reverses the default option to better reflect this broad support. A person would be presumed to consent to donation unless he or she opted out via a registration system, a legal document such as an advance directive, or other means. The choice is preserved; only the default option is changed. This could not only improve donation rates, but also help families better assess any actual objection to donation by the deceased – in contrast to a simple aversion to talking about arrangements for death.
On a broader scale, a change to presumed consent can also demonstrate societal support for donation and help make it the “normal” or conservative choice, making it easier for families to talk about and encouraging people to make their wishes known.
Q: How does your article address this issue and its challenges?
DO: This article builds on existing scholarship examining default to donation by focusing on potential benefits to eye and tissue donation (in addition to organ donation) and on improving the donation process for donor families. Recovery rates for viable solid organs are quite high, which has led many to argue that default to donation would not significantly improve donation rates, but comparatively little attention has been paid to eye and tissue donation. For a variety of reasons discussed in the article, the eye and tissue donation process is quite different and necessitates its own separate analysis.
Additionally, most of the existing scholarship focuses on the autonomy and wishes of the donor. This is the primary concern of the consent process and is of the utmost importance. For consent to legitimately follow from silence, all affected individuals must be properly advised of their right and opportunity to object, as well as the necessity of recording such objection. In this article, we also sought to address the fact that the majority of donation consent decisions are made not by the decedent, but by the family because the decedent’s wishes are not known.
All of these issues are exceptionally challenging because discussion of presumed consent is counter to most other approaches to consent in health care and other areas and raises long-standing and erroneous fears about inadequate care for donors. Yet it is important to have open discussions about these issues because they are meaningful to the public’s health.
Q: Are there areas of opportunity?
DO: Potentially. The current Uniform Anatomical Gift Act, which is the foundation of most states’ donation laws, calls for opt-in consent. However, the UAGA is not set in stone. Prior to 2006 revisions, the UAGA supported presumed consent in a limited fashion. Several states have tried some form of presumed consent in the past, but many of these systems were poorly designed because they failed to adequately involve families in the process. Better presumed consent structures could find support in at least some states, though it will not be an easy discussion by any means.
Q: What impact can presumed consent have on organ donations?
DO: Data from other countries and prior domestic systems indicate that the impact could be substantial, but it is difficult to be sure due to other factors involved. There is much room for improvement, particularly in eye and tissue rates. Moreover, the more significant impact would be in changing the discussion from a social perspective to facilitate a “culture of donation.” This would take time, but it would mean more for donation than any immediate uptick in rates based on changing to presumed consent.
The fundamental goal of presumed consent is not simply to increase rates, but to create a more open system that accurately reflects both majority views on donation and societal approval of donation as meaningful and positive for public health.
Read the full article: “Flipping the Light Switch: New Perspectives on Default to Donation for Organs and Tissues" from the Annals of Health Law’s special edition, "Building the Field of Public Health Law - Perspectives from the Network for Public Health Law." Articles in this edition are authored by Network attorneys and colleagues in the field.
The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided in this document does not constitute legal advice or legal representation. For legal advice, readers should consult a lawyer in their state.
Support for the Network is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed in this post do not necessarily represent the views of, and should not be attributed to, RWJF.