Presuming Consent and More

>(first published on 10 August 2007 at www.bioethics.com; used with permission)

A debate regarding organ donation is getting underway in the UK: it is a debate about “presumed consent.” Presumed consent means that although no permission form is signed, and there is no documented mandated discussion with anyone, a deceased person’s organs can be harvested by the state for transplantation. Another name for this is “opting out”: your organs will be harvested after death unless you have specifically requested that such not occur. The current laws in the UK are revisions of the Human Tissue Act in 1961, and are voluntary, or “opt in,” where one must permit, by prior agreement, one’s organs to be harvested after death.

Such a debate needs to be had, certainly. In the UK, as in the US, thousands of very sick people fill waiting lists for organ transplantation. Families struggle to cope, hope languishes, and often people on waiting lists die. Voluntary programs seem not to work well, although the jury is still out on a particular organization, LifeSharers.

Is this simply about not enough people signing up for organ donation, either as living donors or upon death? Certainly this is true: we need more organs for people whose organs have ceased to function even marginally, if at all. This is not the whole of the matter, however. What follows are 10 issues or questions that need to be addressed in this debate (and this list is far from exhaustive).

  1. How important is personal autonomy—the right a person has to decide what happens to him/herself? Where are its limits?
  2. Is the current system of waiting lists fair? Does justice prevail in terms of how one is put on the list, and how one advances up the list?
  3. What role does informed consent play—for donors or for recipients? How much should a recipient be told about the donor?
  4. Should living donors be compensated for time off work, other costs? Who pays for treatment of complications?
  5. What are the protocols by which one can be declared dead? Shall it be brain death only, or should non-heart-beating donors be considered? Should people who are born anencephalic or those who are in persistent vegetative state be declared dead so their organs can be harvested?
  6. For those who are “medical tourists” (going to another country for a transplant), who speaks for the donor? With reports of prisoner-donors and economically-driven “donations” in some quarters of the world, what is our national responsibility on the global market, when human rights may be violated in the desperate search for organs?
  7. Will the economic considerations outweigh compassionate care, so that patients are subtly coerced into becoming donors, by either healthcare workers or family members?
  8. What are the age limitations for organ donation, for donor or recipient? Where should the lines be drawn?
  9. If a recipient’s transplanted organ fails, where does that person re-enter the waiting list— at or near the top, or at the bottom?
  10. Who should pay for the transplantation? What role does the payer have in the decision, if any?

These are but a few of the considerations we need to think about as we debate changing policies about organ transplantation. Thoughtful reflection, followed by considered action, is needed; presumption is not enough.