wfn.org | Biomedical ethics

[Daphne Mack <dmack@dfms.org>]

For more information contact:
Episcopal News Service
Kathryn McCormick
kmccormick@dfms.org
212/922-5383
http://www.ecusa.anglican.org/ens

99-095

Consultation tackles baffling array of issues in biomedical 
ethics

by Ed Stannard

(Episcopal Life) If you could take a test that would tell 
you that you would contract a non-curable, terminal disease and 
die a horrible death before age 65, would you want to know? What 
if there was a procedure to alter your genes to prevent the 
disease--would you have it done? What if you conceived and could 
have the embryo treated to avoid getting it? And what should the 
church say about these issues?

The first question is a real one for those at risk of 
Huntington's disease, a hereditary brain disease that causes 
intellectual deterioration, and loss of emotional control, 
balance and speech, leading inevitably to death. The second and 
third options may be a reality in the near future. 	

The gene that causes Huntington's has been found (it's on 
chromosome 4) and research is being done on treatments for 
genetic diseases.

The last question isn't an easy one to answer--these are 
excruciatingly complicated questions--but members of the church 
are indeed tackling them.

On June 8-9, the Presiding Bishop's Consultation on 
Biomedical Ethics was held at the College of Preachers in 
Washington, D.C., bringing together theologians, ethicists, 
doctors and others who see technologies such as gene therapy, 
cloning and artificial reproductive techniques as issues that the 
church must address.

Infringing on God's prerogatives

"A first question about our remarkable new powers over 
nature is whether or when use of [such therapies] represents an 
act of hubris, an infringement on God's prerogatives," said David 
Smith, director of the Poynter Center for the Study of Ethics and 
American Institutions at Indiana University. "Do these 
technologies represent a movement of human agency into areas that 
should be left in God's hands?"

Smith delivered the major paper of the consultation, in 
which he reviewed the theological issues involved in bioethics. 
Smith outlined three ways of approaching the issues, based on the 
work of Max Stackhouse:

*An Augustinian approach, which is extremely cautious about 
human intervention in God's creation. Under this model, therapies 
to cure disease may be appropriate, but those that seek to 
improve mankind, such as "cures" for short stature, are likely to 
be frowned upon.

*An approach in which it is our duty to try to improve 
our life, understanding our limits and our relationship to God as 
God's creatures.

*A progressive approach, which "rejects as superstition 
the idea that there are intrinsic limits to what we should do to 
improve the human prospect. Knowledge and skill are meant to be 
used to improve the world, and that fact is to be celebrated."

Each of these models has its pros and cons, according to 
Smith. For example, the middle view must wrestle with the problem 
of which "unnatural" processes to allow: "Say genetic treatments 
are acceptable for therapy but not for enhancement? Where is that 
line to be drawn?"

To a conservative Christian ethicist, donor gametes, 
surrogate mothers and cloning "are all problematical because they 
break the link between the social bond of marriage and the 
biological process of reproduction." But, on the other hand, this 
fails to take into account the real issues of infertility--and 
gay couples, as well. "Parenthood easily becomes an idol," said 
Smith.

While not claiming a place in the progressive school, which 
he said speaks the language of rights, Smith agreed that the idea 
that "the key eligibility requirement anyone must meet is desire 
and willingness to parent ... gets at something profoundly right. 
We all know of situations, beginning with the Holy Family, in 
which unusual parenting arrangements have led to happy homes and 
wonderful children."

Dangerous knowledge

Smith also discussed whether too much knowledge is a 
dangerous thing in some circumstances, using as an example 
Huntington's disease and the genetic test available to determine 
whether a person is at risk (a child of a Huntington's sufferer 
has a 50 percent chance of inheriting the disease).

"In fact, the majority of persons at risk for HD have chosen 
not to be tested," Smith noted. "They prefer an uncertain future 
to the risk of learning a bleak prognosis. For them, knowledge is 
a threat, not a promise. They prefer to keep this scientific 
knowledge as a forbidden truth."

Smith continued to discuss the church's role: "Genetic 
knowledge can be threatening; it can also contribute to a legacy 
of guilt. ... Thus, the church must be prepared to help people 
wrestle with the question of how much --if any -- knowledge they 
are obliged to acquire." The questions include the impact on 
family members and future generations.

The church's role

Another of the consultation's speakers, the Rev. Ellen 
Wondra of Bexley Hall Seminary in Rochester, N.Y., discussed 
theological issues involved in counseling persons with fertility 
issues or genetic diseases. She emphasized that people must be 
assured that their disappointments and suffering have nothing to 
do with sin.

"Sin presumes consequences to the disruption of relationship 
with God--we view it as punishment or correction. Suffering a 
negative experience of pain, loss, loss of meaning, shattering of 
trust--it hurts. Suffering matters. ... There is no doubt that 
people in these situations suffer."

But she warned that individual suffering is not the sole 
concern, and terminating a pregnancy to forestall having a child 
with a genetic anomaly is not always the right answer. For 
example, "Part of what makes living with a child with Down 
syndrome difficult is the absence or withdrawal of resources of 
understanding and support on the part of others." It is in such 
circumstances that the church should take a role.

"Part of the suffering that people experience comes from how 
they are treated by others," said Wondra. "It's called affliction 
and we can remove most of this suffering; and if we do not, then 
we need to talk about sin and redemption." Wondra said another 
way the church can help is to teach people how to reflect 
theologically "well before a critical situation arises."

Dean James Lemler of Seabury-Western Theological Seminary in 
Evanston, Ill., also called for more spiritual formation. "How do 
we as communities of faith provide a means of moral discernment?" 
he asked. Ultimately, after science has accomplished what it can, 
people must know they are loved, Lemler said, and they must know 
that love is "immeasurable, inestimable, grand, broad and 
strong."

--Ed Stannard is news editor of Episcopal Life where this article 
originally appeared.