[published in Pontis (March 1994), The Center for Medical Ethics and Mediation, San Diego, CA.]
Health care decision making is becoming more complex by the week. One of the most important innovations has been the development of health care mediation, especially useful in the resolution of difficult clinical ethics cases. Mediation, however, could possibly be perceived as simply a mechanism to "put a gloss" on an issue, or to "smooth ruffled feathers" - without preserving the factual basis upon which genuine mediation is built.
Fundamental to any mediation effort is the prior determination of the facts involved in the dispute. Indeed, in issues which impact on the health and safety of the general public, a two-tiered process is initiated in which a formal board of inquiry is set up. The charge of this board is not to make recommendations, but to establish the facts, and inform the mediators, parties and the general public of these facts.
As old Aristotle has put it, a small error in the beginning leads to a multitude of errors at the end. This would apply to health care mediation as well. The starting point of any mediation process should be the correct facts. If the starting facts are wrong, then the entire mediation process is wrong (Irving 1994-A). One often unrecognized and neglected area of factual confusion in medical ethics cases is the factual basis of the definition of a "human being". It goes without saying that most of us would readily admit that patients and health care workers are human beings. But if greater attention is not given soon to the scientific facts which are used to ground the definition of "human beings" in the bioethics literature, several populations of adult human beings could be redefine as "non-persons", resulting in less than adequate medical care, attention and dignity. We have to ask ourselves, can the correct scientific facts or the correct definition of a human being be mediated away?
At first glance, the biological facts which have been used for many years in the bioethics literature to determine when a "human being" or a "human person" begins seems uninteresting - and socially irrelevant. (Some of the philosophical "artifacts" employed in these arguments might also seem irrelevant. They are mainly derived from historically inaccurate or indefensible philosophical schools of thought which contain a "mind/body split" - too lengthy to include here). But what most people don't realize is that the "conceptual precedents" on "personhood" which have been set in these debates can be transferred to many adult patient populations. Nor do they realize that the embryological facts upon which these "conceptual precedents" have been grounded are scientifically incorrect (Irving 1993; Kischer 1993). The implications for patients, health care workers, heath care decision making and mediation may seem remote, but the connection is undeniable. A brief walk through a few of these arguments will demonstrate the connection.
All human embryologists know that by the end of fertilization the "23" chromosomes of the sperm, and the "23" chromosomes of the ovum, have combined to produce a human being possessing "46" chromosomes. However, many writers, using scientific data as their starting points, argue that "personhood" appears at different biological marker events during human embryogenesis. For example, it is argued that the human embryo is only a "blob", a lump of the mother's tissues; that the human zygote is no specifically even a human being; or that the completion of the genetic input is at the 2-cell stage. Also, hydatidiform moles and teratomas are often produced which are not human beings, thus the zygote from which they developed itself cannot be a human being.
However, this science is incorrect. After the "23" chromosomes of the male sperm and the "23" chromosomes of the female ovum have combined to form the one-cell human zygote containing "46" chromosomes, clearly only half of those chromosomes come from the mother, and are thus not genetically the same as any of her tissues. Neither a sperm alone or an ovum alone can become a human being - even if implanted in the mother's womb. The zygote is a human being (not a "potential" or a "possible" human being). He or she contains "46" chromosomes - the kind and number which is specific for the human species. Immediately specifically human enzymes and proteins are produced (not cabbage or giraffe enzymes and proteins). And the completion of the human genetic input is already complete at this single cell stage. The zygote will not gain or loose any genetic information throughout all of human development. This genetic information contains virtually all of the instructions for differentiation, totipotency and all of the developmental stages. Genes will be turned on and off to cause the production of molecular information which cascades throughout development. And hydatidiform moles and teratomas proceed from abnormal "zygotes" to begin with, e.g., from ispermy.
Again it has been written that maybe there is "genetic individuality" at fertilization, but "personhood" does not take place until there is "developmental individuality". Before that point, there is a "non-person". Thus only a "pre-embryo" (i.., a "pre-person") is present up to the 14th day, because, e.g., at the 5-7 day blastocyst stage, only the inner layer of cells of the embryoblast will become the later fetus or adult human being; all of the cells from the outer trophoblast layer are discarded after birth (as the placenta, umbilical cord, etc.). After 14 days there is "developmental individuality" (i.e., a "person"), because the formation of the primitive streak prevents twinning from taking place, and because there is finally full differentiation.
However, this science is incorrect. The inner cell layer of the blastocyst is not the only part that becomes the later fetus and adult human being, and all of the cells from the trophoblast layer are not discarded after birth. Many of these cells, in fact, become part of the later fetus and adult gut, median umbilical ligament (which extends from the apex of the urinary bladder to the umbilicus), and its cells are also part of early human blood formation. Twinning does take place after 14 days, e.g., with fetus-in-fetus and Siamese twins; and sometimes it is even genetically determined in the original zygote. Since about two-thirds of monozygotic twinning takes place before 14 days, these twins would have to be classified, then, as "non-persons"! Furthermore, full differentiation, in fact, is not complete until early adulthood. Scientifically, then, we know that both genetic and developmental individuality begin at fertilization.
Others argue for some sort of brain-related criteria - either "rational attributes" (self-consciousness, autonomy, loving, willing, relating with the world around one, etc.) or "sentience" (the ability to feel pain or pleasure, or the integration of the nerve net or brain). But scientifically we know that neither full "rational attributes" nor full "sentience" are present until years after birth. All of these theories are simply posited, and many scientists have argued that there is absolutely no scientific evidence which demonstrates the supposed correlation between "brain birth" and "brain death", pre-person and person, consciousness and self-consciousness. And if one defines a human person in terms of "rational attributes" only, or "sentience" only, one will eventually have to argue also for the moral permissibility of the infanticide of normal healthy human infants (as many writers do), since full rationality, or full brain integration or sentience are not present until well after birth.
The point is, even though these arguments for "personhood" - i.e., "individuality", "rational attributes" or "sentience" - are grounded on incorrect science (and therefore invalid), these invalid conclusions can still be unwittingly transferred to many adult human populations. One would logically have to argue, for example, that the following list of adult human patients may genetically be human beings, but they are not human "persons": Alzheimer's and Parkinson's patients, the senile, persons with mental illness, the mentally retarded, dug addicts, alcoholics, the comatose, patients with multiple sclerosis, parapelegics, cripples, patients in persistent "vegetative" state, etc. If these adult human populations are only human beings but not human "persons" - because they do not exercise rational attributes" or "sentience" - then they also will not have ethical or legal rights and protections. In fact, a paper was recently presented in which the writer not only agreed with Peter Singer (the animal rights philosopher) that the infanticide of normal human newborns was morally permissible (Singer 1981), he then also argued that for the same reasons, the higher primates, pigs, dogs, etc. - which have such high degrees of "sentience" - should not be used in experimental research, but that the mentally ill should be used in their place.
Although such a drastic suggestion, of course, would never be taken seriously, these "conceptual transfers" can still have a subtle impact on many health care decisions and mediation processes. The obvious example is in the area of informed consent. Let's take the sticky situation of abortion. If a woman does not really know the true embryological facts of what it is she is aborting - or refuses to know them - then how could she give her physician valid informed consent? If years later she puts 2+2 together and in fact suffers psychologically, how can a psychologist or a psychiatrist properly treat her? Will she be written off as simply unrealistic and over-emotional? Will other health care workers join the ray pro and con the woman's plight (arguing from their scientifically incorrect understanding of "personhood")?
How might the quality of medical care for some of the above "less than perfect patients" be affected if physicians, nurses and other health case workers perceive these patients as somehow "less than full human persons"? This might include the small uncomplicated details which require care and attention on a routine daily basis, as well as some of the more complicated medical treatment decisions Are these patients to be considered as "useless eaters", or inequitably fall prey to the allocation of scarce medical resources cuts? If incompetent, will their best interests really be the determining factor in surrogate decision making - or will it b the best interests of the surrogate - or of the hospital? When conflicts arise concerning these patients, are they resolved one way rather than another because of the perceptions by some of those involved in the mediation process that these patients are"non-persons" whose "quality of life" does not demand that they be given equal respect and equal medical treatment?
Can these patients be further abused as medical research subjects (Irving 1994-A; Shamoo and Irving 1993-A; Shamoo and Irving 1993-B)? he earlier examples of the Willowbrook and Tuskegee experiments, and the recent examples concerning the radiation experiments in the 60's and 70's would suggest this. Such episodes have also been reported this month where researchers had purposely designed their protocols to cause relapses in patients with schizophrenia. And NIH has approved research in which holes can be bored in the skulls of patients with Parkinson's disease as controls to other Parkinson's patients who will, in addition, have fetal tissue implants. Do these sorts of abuses occur because the scientists (and IRB's, etc.) perceive these patients as somehow less than "persons"? And when advocates respond to such abuses, are they really taken seriously? Are these patient populations use more in medical research than other patient populations? Are conflicts about protocol designs and the possible sources of research subjects mediated and resolved on the basis of any perceived inequality in the "personal" dignity of these patients?
These are just a few examples - but sufficient to illustrate in outline form how allowing the incorrect science to be used in the arguments on "fetal personhood" has lead to some incorrect definitions of a "human being" and a "human person" - which definitions can become subtly ingrained in our vocabulary, and unwittingly transferred to adult human patients. This in turn can lead to poor quality health care on both a routine and an acute basis, questionable informed and proxy consent, an abuse in medical research. This might occur because some in the health care and mediation settings could perceive these patients as somehow not fully "persons" who deserve equal care, respect and dignity.
The fact is, however, that they are persons in the full sense - they simply cannot always exercise their capacities for "personhood". This should be clearly understood and acknowledged as fact before health care decisions and the mediation of health care disputes takes place. Neither the correct scientific facts nor "personhood" should be mediated away.
Irving, Dianne N., "The impact of scientific misinformation on other fields: Philosophy, theology, biomedical ethics and public policy", Accountability in Research 2:4 (April 1993), 24-272.
Irving, Dianne N., "Which ethics for science and public policy?", Accountability in Research February 1994-A.
Irving, Dianne N., "Psychiatric research: reality check", The Journal of the California Alliance for the Mentally Ill 1994-B (forthcoming).
Kischer, C. Ward, "Human development and reconsideration of ensoulment", Linacre Quarterly 60:1 (Feb. 1993), 57-63.
Shamoo, Adil E. and Dianne N. Irving, "Accountability in research with persons with mental illness", Accountability in Research November 1993-A.
Shamoo, Adil E. and Dianne N. Irving, "The PSDA and the depressed elderly: 'Intermittent competency' revisited", Journal of Clinical Ethics 4:1 (Feb. 1993-B), 74-80.
Singer, Peter, "Taking life: abortion", in Practical Ethics (London: Cambridge University Press, 1981), 122-123.