Presumed consent organ donation should be the law across the United States (bibliography and evidence)

General

Presumed Consent For Organ Donation (2020). This article explains that while the US has opt-in organ donation, more and more countries are adopting opt-out.

Presumed vs Expressed Consent in the US and Internationally (2005). This article discusses the pros and cons of organ donation, with citations! It also includes a discussion of presumed consent policies in other countries and claims PC in other countries increases organ donation.

Should the United States Sign Off on Presumed Consent? (2014-15). This article discusses some of the pros and cons of presumed consent for organ donation in the US and the general limitations for using it to increase organ donation

Increasing organ donation by presumed consent and allocation priority: Chile (2014). This article argues for a presumed consent system that is combined with an incentive system that prioritizes individuals in need of organs if they have previously agreed to be donors.

Organ Donation: Presumed Consent and Focusing on What Matters (2017). This article argues that there are other factors at play in places where informed consent policies increased organ donation.

Is presumed consent an ethically acceptable way of obtaining organs for transplant? (2018).The near-universal acceptance of cadaveric organ donation has been based on the provision of explicit consent by the donor while alive, either in the form of a formal opt-in or informal discussion of wishes with next of kin. Despite the success of transplantation programmes based on explicit consent, the ongoing imbalance between demand and supply of organs for transplantation has prompted calls for more widespread introduction of laws validating presumed consent with facility for opt-out as a means of increasing organ availability. The Department of Health (UK) has recently concluded a consultation on the introduction of such a law for England. This article explores the debate on presumed consent from an ethical point of view and summarises the key arguments on both sides of the ethical divide.

Presumed Consent (book chapter)

Presumed Consent in Organ Donation: a Silver Bullet for Nova Scotia? (2020). This article discusses the potential impact of presumed consent on organ donation rates.

The Effect of Presumed Consent Defaults on Organ Donation (2016). This article argues that while other factors can explain the increase, there is an increase in organ donation that is attributable to informed consent.

Presumed consent and the implications for eye donation (2020). This brief article notes that England changed its law to opt-out but that it’s not clear that it will impact donation rates because there is other type of donation infrastructure that is lacking.

Pro

How opt-out organ donation could affect US waiting lists (2019). This article argues that presumed consent will increase organ donation and save thousands of lives. References the same study: How Opt-Out Donation Could Affect U.S. Waiting Lists (2019). Additional article.

Estimated Association Between Organ Availability and Presumed Consent in Solid Organ Transplant (2019). Results  This study considered 524 359 unique candidates (aged ≥18 years; 320 908 [61.2%] male) for a solid organ transplant from January 1, 2004, to December 31, 2014. With a base case scenario of a 5% presumed consent–associated increase in donors, the removals (owing to death or illness) from the waiting list for all organs would have an associated 3.2% to 10.4% mean reduction, depending on the random or ideal allocation of new organs to patients on the waiting list. Sensitivity analyses showed that waiting list removals could be decreased up to 52%; however, this reduction was not enough to completely eliminate waiting list removals during the study period. The biggest estimated increases in annual life-years gained associated with a presumed consent policy were in kidney transplant candidates (95% CIs by deceased donor increase: 5% increase, 3440-3466 years; 15% increase, 10 321-10 399 years; 25% increase, 17 201-17 332 years) and liver transplant candidates (95% CIs by deceased donor increase: 5% increase, 898-905 years; 15% increase, 2693-2714 years; 25% increase, 4448-4523 years). Adoption of a presumed consent policy could result in a 4295-year (95% CI, 4277-4313 years) to 11 387-year (95% CI, 11 339-11 435 years) increase in life-years, accounting for the survival advantages associated with a transplant.

Presumed Consent, Autonomy, and Organ Donation (2004). I argue that a policy of presumed consent for cadaveric organ procurement, which assumes that people do want to donate their organs for transplantation after their death, would be a moral improvement over the current American system, which assumes that people do not want to donate their organs. I address what I take to be the most important objection to presumed consent. The objection is that if we implement presumed consent we will end up removing organs from the bodies of people who did not want their organs removed, and that this situation is morally unacceptable because it violates the principle of respect for autonomy that underlies our concept of informed consent. I argue that while removing organs from the bodies of people who did not want them removed is unfortunate, it is morally no worse that not removing organs from the bodies of people who did want them removed, and that a policy of presumed consent will produce fewer of these unfortunate results than the current system.

Should there be ‘presumed consent’ for organ donations? (2019). This article review the adoption of presumed consent in Nova Scotia and argues that it is an important way to increase organ donation.

Doctors praise plan for organ donor presumed consent in England (2019). This article argues informed consent increased organ donation in the UK.

Futterman LG. Presumed consent: the solution to the critical donor shortage? The Ethics of Organ Transplant. In: Caplan AL, Coelho DH, eds. The Ethics of Organ Transplant: The Current Debate. Amherst, New York: Prometheus Books; 1998:161-172

Gill, Michael B. “Presumed Consent, Autonomy, and Organ Donation.” Journal of Medicine and Philosophy, 2004: 37-59.

Con

OPT‑OUT ORGAN DONATION: IS NOVA SCOTIA’S ‘DEEMED CONSENT’ LAW ETHICAL? (2021). In January 2021, Nova Scotia will become the first place in Canada to have “deemed consent” for organ donation. Under this law, it will be assumed that people who don’t document their wishes about organ donation have consented to becoming organ donors. This is sometimes called an “opt-out” system, and is used in some European countries. This is a significant departure from the usual practices around consent in health care in Canada. As a clinical ethicist with research interests in how we respond to inequity, I have concerns about whether potential negative effects on respect for personal choice can be justified.

We need more organ donors, but presumed consent is not a magical fix (2019). This article contends that presumed consent won’t lead to a large increase in organ donations and that it will increase family vetoes.

Organ Donation: Autonomy, Presumed Consent, and Mandated Choice.This article argues that presumed consent doesn’t protect autonomy and that mandate choice is a better approach to organ donation.

Presumed Consent to Organ Donation: Its Rise and Fall in the United States (2009) For some forty years in a little-known experiment, the United States tried presumed consent on a limited basis. In many states,
when dead persons came .under the custody of coroners or medical examiners, those officials could authorize cornea donation-or even organ donation-in the absence of a known objection to the donation
by the decedent or a family member. However, in 2006, the Revised Uniform Anatomical Gift Act recommended against presumed consent, and most states have followed its lead. This Article reviews the history of presumed consent in the United States and concludes that presumed consent failed because it could not overcome the major reason why people do not become organ donors after death-the refusal of family members to give
consent to donation. To the extent that presumed consent allowed family members to overcome the presumption and withhold consent, it did not address the reasons why family members say no. To the extent that professionals tried to preserve the presumption by bypassing families, they validated fears that doctors will be too quick to take organs from dead persons who would not have wanted their organs removed. The United States’s history with presumed consent indicates that other proposed reforms will be needed to
address the shortage of organs for transplantation.

Should The Government Require Your Consent To Be An Organ Donor? (2017). This article contends that adopting opt-out in the US will produce a backlash against organ donation.

Should we presume consent for organs? (2017). This article argues presumed consent won’t increase organ donation and that it is unethical.

Organ donation: presumed consent is not enough (2017). From 2020, organ donation in England will switch to an opt-out approach. This system, similar to that introduced in Wales in 2015, will assume everyone to be an organ donor unless they specifically register their objection.6044 people were on a transplant waiting list in England in 2017–18. And, while surveys suggest that 82% of people support organ donation, under the current opt-in system—whereby individuals must proactively give consent—only 37% have signed up to the NHS Organ Donor Register. Estimates suggest the change in organ donation policy could save up to 700 lives every year.However, despite a clear need and good intentions, a change in policy is unlikely to be enough to meet the shortfall. For example, under both opt-in and opt-out systems, it is the donor’s family who have the final say. The proportion of families who currently refuse donation despite their relative having signed up to the donor register is around 7%, while less than half of families agree to donation if the wishes of their relative are unclear. A psychological study undertaken by researchers from the Queen Mary University of London (QMUL) suggests that this problem could actually worsen under the new approach. By presenting 1294 adults with fictional scenarios, they found that relatives would be more certain that a family member truly wished to donate if they had actively signed up to be an organ donor than if consent was presumed. Indeed, in Wales, there were slightly fewer cases of organ donation in the year following the change to an opt-out approach.

Presumed Consent (2017). This post contends that presumed consent will not increase organ donation and that other action is needed.

Presumed Consent for Organ Donation: Principlism Opts Out (2017). The number of available organs for transplant each year falls woefully short of the number of patients in need of donated organs in the United States. While approval numbers are very high for organ donation, the number of registered donors is much smaller. A commonly proposed solution to increase the pool of organ donors is to replace the current explicit consent policy with a presumed consent system, where everyone is considered to have consented as a donor unless they have opted out by joining a non-donor registry or by some other method. This proposal raises many ethical questions that must be examined in light of standard medical ethics principles before implementation of such a policy should be supported. On a practical level, the evidence for the results of putting presumed consent policy in place should first be analyzed. Careful consideration of such evidence reveals that implementation of presumed consent in the United States may raise donor rates, but this result is not at all as guaranteed as many proponents claim. Under principlism, a common ground bioethics approach, presumed consent is morally questionable at best. Examination with regards to the four pillars of principlism, beneficence, non-maleficence, justice, and autonomy, reveals considerable ethical difficulties that all but disqualify presumed consent from consideration. While it is possible that such a system would increase organ donation rates, it increases the potential for discrimination in the donation process, is likely to subvert doctor-patient trust in some cases, and undermines the concept of true informed consent in medicine

Organ donation: Does an opt-out system increase transplants? (2017)

Flawed Assumptions: Ethical Problems With Proposed Presumed Consent Legislation (2017)

Presumed consent will not automatically lead to increased organ donation (2018)

AT WHAT COST PRESUMED CONSENT FOR ORGAN DONATION? (2019)

Presumed consent for organ donation: a clinically unnecessary and corrupting influence in medicine and politics (2014)

Presumed consent for organ donation: a case against (2011). This article argues that presumed consent will undermine support for organ donation.

Presumed Consent Not Answer to Solving Organ Shortage in U.S., Researchers Say (2011). The title is self-explanatory.

THE “NEW BODY SNATCHERS”: ANALYZING THE EFFECT OF PRESUMED
CONSENT ORGAN DONATION LAWS ON PRIVACY, AUTONOMY, AND LIBERTY
(2011)

An Evaluation of the Ethics of Presumed Consent (1993).

The Subcommittee resolved that at the present time it is unadvisable to pursue the policy of presumed consent. Three main considerations guided us. First, the practicality of the policy must be questioned given that public opinion surveys suggest its unpopularity. The recent NKF/ UNOS survey found support at approximately 37%. A 1985 Gallup survey placed public support at 7%. (10) More profoundly, the policy stands to contradict a profound respect a majority of Americans reserve for the value of individualism, as evidenced in the following pronouncement:

Presumed consent is not quite the American way. It is relatively coercive, compared to the more classical freedom of choice that characterizes our way of life. Consent should be positive, not implied. (11)

In the Subcommittee’s view, the anti-statist, individualistic perspective is sufficiently distributed in the general population to make problematic the acceptance of presumed consent.

Second, the Subcommittee was unimpressed with mechanisms in place in countries which employ presumed consent to protect the rights of objectors to donation. These mechanisms often appear to offer only superficial respect for individual autonomy. The mechanistic difficulties convince us that the quality of “consent” likely to be “presumed” would fail the practical challenge of matching individual preferences for donation with candidacy for donation. We as a Subcommittee challenge the integrity of the notion of “presumed consent.” Our challenge is based on the fact that data make clear that consent cannot be presumed. Focus groups organized in the NKF/UNOS Organ Donation Study confirmed the findings of national public opinion surveys (12) that a significant portion of the public is opposed to donation on grounds of distrust of the medical community in general and the organ donation and allocation process in particular. (13)

The third consideration was the Subcommittee’s positive assessment of the alternative of “required response.” In our view, the alternative can significantly lead to an increase in the supply of organs without risking the violation of the principle of individual autonomy by removing organs from persons who objected to donation but did not have the preference recorded by the proper authority.

Gill MB. Presumed consent, autonomy, and organ donation. J Med Philos. 2004;29(1):37-59.

Dennis JM, Hanson P, Hodge EE, Krom R, Veatch RM. An evaluation of the ethics of presumed consent and a proposal based on required response. UNOS Update. 1994;10(2):16-21.

Kennedy I, Sells RA, Daar AS, et al. The case for “presumed consent” in organ donation. Lancet. 1998;351(9116):1650-1652.

[3] Simon Bramhall. “Presumed consent for organ donation: a case against.” Annals of the Royal College of Surgeons of England, 2011: 268-272.

John Fabre, Paul Murphy, and Rafael Matesanz. “Presumed consent is unnecessary.” British Medical Journal, 2010: 922-924.

Remco Coppen, Roland Friele, Richard Marquet, Sjef Gevers. “Opting-out systems: no guarantee for higher donation rates.” Transplant International, 2005: 1275-1279.

Donate Life California. Presumed Consent: An Attractive Concept with Unattractive Results. May 8, 2014. http://donatelifecalifornia.org/education/faqs/presumed-consent/ (accessed May 8, 2014).

RM Veatch and JB Pitt. “The myth of presumed consent: ethical problems in new organ procurement strategies.” Transplant Proceedings, 1995: 1888-1892.