NDY Submits Public Comment on Proposal on Living Organ Donation By “Persons With Certain Fatal Diseases”

https://goo.gl/bGZybM

This is a complicated subject. It impacts people with disabilities in multiple ways, both as organ donors and recipients. But the tone and recommendations of the proposal by the Ethics Committee of the Organ Procurement and Transplantation Network needed a response. Some excerpts follow.

The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. The safety of potential donors should be of utmost concern. All lives of living donors must be equally valued. The OPTN must never pursue any policies that expose some donors to more risk than other donors. . .

We agree that there are some underlying health conditions that would not preclude a willing person from being a living donor. Decisions must be made on a case-by-case basis with the preservation of the person’s normal health as a paramount value. We are therefore disturbed and disappointed by the tone and tenor of the proposal as well as the recommendations that would create a two-tiered system of assessment, reporting and scrutiny.

The Committee’s focus as it seeks to expand the donor pool is not on donor protection but on transplant hospital protection. Although the details of implementation will be left to other committees, the thrust of the proposal is on reducing scrutiny for certain donor deaths. The Committee feels that in some cases, harm to donor can be traded off against other factors. The Committee gets to where it wants to be by conflating conditions which can be chronic and disabling with fatal conditions, and then blurring everything into terminal. This brings to mind what James McGaughey, former executive director of Connecticut’s Office of Protection and Advocacy, has written in a somewhat different context, “physicians…did not understand the prospects of people with disabilities to live good… lives…and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability…people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers…respond to them. ”. . .


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