Sunday, February 4, 2007

The Depersonalization of Genetic Selection

In the futuristic movie Gattaca, parents are encouraged to “design” their babies through the technology known as embryo screening. The process is portrayed as practically guaranteeing a baby devoid of genetic defects and undesirable characteristics. In concert with Gattaca’s portrayal, most people today envision embryo screening as a means to “weed out” genetic defects and select those embryos with the potential to develop into persons who possess valuable traits.

But to the surprise of many, recent discoveries of couples utilizing the technique to choose offspring with genetic defects is causing quite a stir. A recent survey of U.S. clinics that offer embryo screening suggests that some dwarf and deaf couples may be intentionally choosing to implant embryos that carry the genetic markers for dwarfism and deafness. http://www.msnbc.msn.com/id/16299656/

Moved by the desire to “reproduce children in their own image,” these couples are fighting for their “right” to have the kind of children capable of sharing in the dwarf and deaf cultures where these sorts of defects are considered “normal.” Critics of the practice say that this “deliberate crippling of children” has taken the “concept of designer babies too far.” While there’s much that can be discussed here, such as whether embryo screening is ethical to begin with, and whether this practice serves the goals of medicine, I am going to focus briefly on an underlying philosophical point that’s often overlooked.

Debates of this kind are indicative of the failure to rightly situate the philosophical source of personal value. Notions of personal value based on a repeatable trait or cluster of attributes fall short in providing stability for grounding human dignity and worth. Rather than relying on replicable traits, personalist philosophers focus on that which is irreducible and unrepeatable in persons—something that can only be grasped from an inward turn.

From an interior perspective, one is able to lay hold upon the personal subjectivity and the incommunicable being with which each person can claim as uniquely his own and not another’s. Introspection of this metaphysical standpoint opens up a depth of being far more capable of establishing the uniqueness of each human person. Notions of personal identity and value based on a shared trait or culture fail to adequately capture what is irreplaceable in the person. Thus, efforts to encourage and support the flourishing of individuals with disabilities can only properly flow from a perspective that values persons as persons, not just for the traits they possess or the cultures of which they are a part. (For further exploration, I recommend John Crosby’s The Selfhood of the Human Person.)

Monday, January 1, 2007

The Future of Organ Transplantation

Two recent breakthroughs in human cell research suggest that a revolution in transplantation may be on the horizon.

In August of 2005, a study funded by the UK Government, and led by researchers from Kingston University’s School of Life Sciences, disclosed that the research team had grown an artificial liver from umbilical cord stem cells. Hailed as the first step in creating a fully artificial liver for transplantation, researcher Dr. Colin McGuckin said, “the transplant of a section of liver grown from cord blood could be possible within the next 10 to 15 years.”
http://www.kingston.ac.uk/%7Ekx25594/news/news-archive/2005/august/Stem_Cell.htm

More recently, (April 2006), news reporting agencies documented a breakthrough in the growth of transplantable human bladders from tissue taken from recipients’ own defective bladders. The bladder cells were cultured in a nutrient bath in a laboratory, and after two months, the bladders were fully grown. Not only were the transplants successful, but the recipients were free of side effects, including tissue rejection. The Wake Forest University team of scientists are currently working on ways to grow 20 different tissues and organs. http://news.bbc.co.uk/1/hi/health/4875244.stm

This is surely welcomed news. For not only will these advances potentially relieve the problems of organ rejection and the immense shortage of suitable donors, but also the ethical problems surrounding the use of brain dead donors.

Those familiar with the history of brain death and organ transplantation know they share a common, and perhaps, dubious past. In 1968, when a Harvard ad hoc committee first suggested neurological tests for the condition known today as brain death, they failed to say why (biologically or philosophically) brain death should be equated with human death. Instead the committee justified brain death on pragmatic grounds, one of which was to remove the ethical problems surrounding organ donation. But if brain dead patients are not really dead, then the removal of their organs for transplantation is the direct cause of their deaths.

Despite latter attempts to construct a conceptual basis for brain death, many bioethicists continue to recognize that brain death fails to correspond to any coherent biological or philosophical conception of death. In fact, over the last 20 years or so, advances in critical care medicine continue to challenge the conceptual assumptions put forth by brain death proponents. But instead of abandoning brain death, some bioethicists are suggesting that certain neurologically diminished patients (such as PVS patients) are not really being harmed if their organs are removed for life-giving transplants, given their severe, neurologically impaired state. Such utilitarian thinking, however, would only further the problems surrounding organ donation. Instead, prudence suggests that we ought to focus our energies on more promising technologies that remove the problems of organ rejection and donor shortage, while at the same time allay much of the ethical controversy surrounding current practice.

Tuesday, December 26, 2006

Means and Ends of Stem Cell Research

Recently (Dec 12), the BBC issued a disturbing report of the possible killing of newborn babies in the Ukraine to feed a flourishing black market for bone marrow stem cells. (The Ukraine is considered the self-styled stem cell capital of the world.) Mothers have reported giving birth to healthy babies only to have them taken away and never seen again. We've known for some time of a market for aborted fetuses as a source of marrow stem cells, but now video evidence of dismembered, infant bodies stripped of their organs (including brains) adds to the suspicion that child-trafficking has now reached a new level. If such reports prove true, it further shows what lengths people will go in pursuit of the unproven claims of those who carelessly promote stem cell "miracle" cures. [ http://news.bbc.co.uk/2/hi/europe/6171083.stm ]

Going back a month, the November US elections also demonstrate the lengths people will go to advance agendas that are ethically questionable and may not be supported by the public. One case in point is the ballet initiative known as Amendment 2 in the State of Missouri. Missouri voters were told that the amendment banned human cloning; in reality it only banned the gestation of a human clone. The amendment authorizes somatic cell nuclear transfer--the same cloning method successfully used to produce Dolly the sheep--in which a woman's egg is combined with a body cell to produce a human embryo for research purposes. Under the veil of deceptive language and hyped promises, the people of the state of Missouri were deceived into thinking they were voting for non-controversial research that would cure many dreaded diseases.

What are we to make of all this? Well, for starters, it seems there's a lot of misinformation about stem cell research in general. Confusion generally stems (no pun intended) from the failure to distinguish between embryonic and non-embryonic stem cells. Stem cells are the precursor cells for the 200+ tissues in the human body. Non-embryonic stem cells are more developed or specialized than embryonic stem cells and are believed to be limited in tissue development potential compared to embryonic stem cells, though this is unproven. Yet, despite the overzealous claims of some researchers and the emotional pleas of celebrity spokespersons, the simple fact is there are no embryonic stem cell cures on the horizon. While the most promising research results are from non-embryonic stem cells (about 72 treatment therapies according to my last count), there are no embryonic stem cell research treatments to date.

Additionally, much controversy exists with regard to the means used to obtain embryonic stem cells, which always results in the destruction of embryos. For those who believe life begins at conception, embryos are vulnerable human persons who are being killed for the sake of questionable research. And while non-embryonic stem cell research is less controversial, some are resorting to unethical means, as is the case in the Ukraine, to obtain stem cells. So what is driving all this?

At the top of my list is money. This is most clearly evident in the black market in the Ukraine. It's a simple case of supply and demand. As demand increases, supply decreases, and the value of these potentially life-giving cells exponentially rises. Simple economics, right? However, as we know, these sorts of economic conditions are fertile ground for black market entrepreneurs who care little about the means used to obtain their own ends as well as their buyers'.

But the influence of money does not exhaust its power in this alone. Researchers need money to fund their institutes, and often see this funding as a means of survival. Moreover, the allocation of government money (federal or state) for research which promises to relieve society of many its most dreaded diseases is attractive to policy makers.

A related, though distinct consideration is the nature of medical research and the quest for notoriety. While the motives of research scientists are usually expressed in altruistic terms, an accompanying motive indicative of research science is the desire for recognition and immortality--the desire to be the next James Watson or Francis Crick. From the outside it is difficult to appreciate how much pressure and competition exists in the field. While this can be a good thing, it can also blind those involved from careful consideration of the means used to achieve beneficial ends.

Finally, although public opinion is fairly split regarding embryonic stem cell research, people in general are prone to overlook ethical means when the end is framed in emotional and personal terms. Emotionally latent pleas and personal accounts of suffering tend to blur ethical vision, and when it comes to experimental medicine, clarity of vision is needed most. While sensitivity to suffering is important, and we ought to do what we can to relieve suffering, it is not so important that it trumps the means.