Another subtle way of discrimination added to discrimination before birth?
We have often addressed the medical and bioethical challenge to obtain more organs for transplantation. The global organ shortage and the need to obtain them in the best conditions could jeopardize the dignity of the end of life of the eventual donor (read HERE and HERE). The already long waiting lists for donor organs continue to grow. Medical teams are responsible for the ethical administration of the scarce organ resources and the different necessities of the eventual recipient.
In this context, the transplantation priority of patients with mental diseases and disabled people, in general, merits particular interest from a medical and bioethical point of view.
In this respect, the American National Council on Disability published a lengthy review on September 25, 2019, entitled, Organ Transplant Discrimination Against People with Disabilities (Part of the Bioethics and Disability Series). We excerpt what we think of significant interest. The section on Disability Discrimination During the Evaluation (pgs 30-31) gives some idea of the breadth of the issue:
“[…] many organ transplant centers have written policies or practices that arguably fail to follow federal law by facially discriminating based on disability. That said, there are few empirical studies analyzing how organ transplant centers actually evaluate patients for transplantation, particularly with respect to how any particular disability influences which patients are selected. A study conducted by Stanford University in 2008, for example, showed that 62 percent of pediatric transplant centers tended to make ‘eligibility decisions based on disability . . . informally, making discrimination difficult to show.’ A more recent 2017 study found that no comprehensive study of the patient selection criteria for US-based transplant programs for people with psychiatric disabilities had been conducted in over 20 years. But it appears that many transplant centers, including those that either lack written policies or have written nondiscriminatory policies, discriminate on the basis of disability when evaluating patients for organ transplants.
Disability discrimination persists in the evaluation process because, in spite of the evidence, on the contrary, many physicians still view HIV and AIDS, as well as intellectual, developmental, or psychiatric disabilities [including Down’s syndrome and autistic individuals], as relative or absolute contraindications to transplant, and many transplant centers continue to consider the disabilities of organ transplant candidates when making determinations about which candidates are eligible to be placed on the waiting list for a transplant. This view of disability as an absolute or relative contraindication to an organ transplant reveals pervasive biases within the medical community, demonstrating that disability discrimination during the evaluation process is problematic.
For instance, a 2006 National Public Radio story found that about 60 percent of transplant centers report having severe reservations about giving a kidney to someone with a mild to moderate intellectual disability. A subsequent 2008 survey of pediatric transplant centers found that 43 percent always or usually consider intellectual disabilities an absolute or relative contraindication to transplant due to assumptions about the quality of life, concerns regarding ‘compliance or long-term self-care,’ ‘financial concerns,’ and ‘the functional prognosis of the delay itself.’” (read more HERE).
President of the American Society of Transplant Surgeons statement
Although this specific discrimination is banned by Federal Law and 16 states include this ban in their legislation, Dr. Marwan Abouljoud, president of the American Society of Transplant Surgeons, said institutions have differing standards for weighing the importance of an intellectual disability in a transplant decision. Ideally, he said, the committee that determines whether to list someone for a transplant will include social workers and behavioral psychologists, as well as program leadership, who can find ways to help the person comply (read HERE).
This is a complex bioethical issue that should be properly addressed by the decision of a special committee, as Dr. Abouljoud proposes.