Ethics of Genetic Testing: Part 2

Tuesday, January 6. 2009

Ethics of Genetic Testing: Part 2

Previously, I wrote about the morally acceptable aspects of genetic testing. There are many. Now I want to talk about the unethical uses of genetic testing.

Most of genetic testing is like money. That is, it is neither moral nor immoral. Money can be used for good or evil, but it in and of itself it is morally neutral. Genetic testing simply provides information. What is done with that information is where the ethical issues arise. Clearly, if the information used from genetic testing is used to discriminate against an otherwise healthy individual, then that would be immoral. There are endless scenarios of where the information provided by genetic testing goes very wrong. I do not want to delve into this area of ethics because it would be like writing about the endless ways money can be used for evil.

What I do want to discuss are the times when genetic testing is implicitly wrong. There are only two times when genetic testing is inherently evil: prenatal genetic testing with the intent to abort and preimplantation genetic diagnosis.

Most prenatal testing is done to learn more about the fetus and to help parents and doctors prepare for any complications or genetic disorders. It is true that many times the end result of the testing is abortion, but that is NOT the original intent of the testing. In this case the genetic testing is morally neutral, while the use of the information is morally wrong.

Prenatal genetic testing is immoral when the intent is to abort if an unfavorable result is returned. This would be the case if a couple wants a boy, and gets genetic testing with the intent of aborting if the fetus is a girl. Also, if a couple has an amniocentesis knowing that if their child has Down Syndrome, or any other genetic disorder they will abort. Rev. Tadeusz Pacholczyk, the Director of Education at the National Catholic Bioethics Center writes in his essay, "Prenatal Testing Brings Moral Dangers":

"If prenatal testing is done with the intention of having an abortion when a defect is discovered, such prenatal testing itself would constitute a gravely immoral kind of action. Even if no anomalies were found, but a mother and father carried out prenatal testing with the firm intention of aborting a defective child, they would be culpable for a seriously sinful decision, and, if they were Catholics, they would need to bring the matter to confession. The intention to commit a serious evil, even if not ultimately acted upon because of circumstances, constitutes grave sin."

Father Pacholczyk also confirms that in general prenatal testing can be a moral good:

"Prenatal testing is permissible, indeed desirable, when done with the intention of providing early medical intervention to the child. For example, the life-threatening disease known as Krabbe's leukodystrophy can be successfully treated by a bone marrow transplant shortly after birth. If a diagnosis of the disease is made by prenatal testing, the family can initiate the search for a matched bone marrow sample even before the child is born. That way, valuable time can be saved, and the early intervention improves the likelihood of a good outcome. Certain other diseases like spina bifida can be treated by doing microsurgery on the baby while still inside the womb. Prenatal testing which aims to provide diagnostic information to assist in the treatment of an in utero patient represents a morally praiseworthy use of this powerful technology.

Prenatal testing to help parents come to a more serene acceptance of a child with a permanent disability would also represent a morally legitimate use of this technology, provided the testing itself would pose minimal risk to the unborn child. When a couple discovers they are pregnant, they should explicitly discuss the possibility that their child might have a disability."

The second time when genetic testing is inherently immoral is in the case of preimplantation genetic diagnosis or PGD. PGD is used to screen embryos created in a laboratory with in vitro fertilization for certain genetic traits. In PGD, a single cell is taken from an embryo and tested for as many as 6,000 different genetic variations. The intent of PGD is to find the most genetically desirable embryos to implant and embryos that do not make the cut are either discarded, donated to research or put in the deep freeze.

There are multiple ways in which PGD is immoral. First, the embryos that are tested are created by in vitro fertilization or IVF. In IVF, eggs are extracted from the mother and united with sperm from the father in a petri dish completely removing the unitive aspect of sex from reproduction. The Catholic Church has many reasons why IVF is immoral, most notably that every human being has a right to be created out of love for love in their mother's womb, not in a laboratory by a third party. It is against the dignity of every human being to be mass produced in a petri dish. Unfortunately, IVF treats human embryos more like man-made commodities rather than young lives deserving of the dignity given to the rest of humanity.

Nowhere is this more evident than in the practice of PGD where the newly created embryos are subjected to genetic testing that is intended to find out which of them make the genetic cut. Like the prenatal testing with the intent to abort discussed previously, PGD is genetic testing with the intent of discarding the human beings that "fail" the test. This fact alone makes PGD immoral.

Often PGD is used to find an embryo that is a genetic match for an older sibling who has an fatal disease and needs a transplant. In this case, PGD is used to screen for certain genetic traits instead of against genetic defects. The chosen embryos are implanted and brought to term with the express purpose of becoming a tissue donor for their older sibling. Here PGD is used to create human beings that are desired only for their biological material. A BBC News headline once called these children "spare parts babies."

In the recent Instruction Dignitas Personae on Certain Bioethical Questions, the Congregation for the Doctrine of the Faith wrote the following on PGD:

Unlike other forms of prenatal diagnosis, in which the diagnostic phase is clearly separated from any possible later elimination and which provide therefore a period in which a couple would be free to accept a child with medical problems, in this case, the diagnosis before implantation is immediately followed by the elimination of an embryo suspected of having genetic or chromosomal defects, or not having the sex desired, or having other qualities that are not wanted. Preimplantation diagnosis – connected as it is with artificial fertilization, which is itself always intrinsically illicit – is directed toward the qualitative selection and consequent destruction of embryos, which constitutes an act of abortion. Preimplantation diagnosis is therefore the expression of a eugenic mentality that “accepts selective abortion in order to prevent the birth of children affected by various types of anomalies. Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of ‘normality’ and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well”.

Finally, PGD is immoral simply because it puts the life of the embryo being tested at grave risk. In PGD, a needle is inserted into the tiny embryo and a single cell is extracted for testing. Needless to say, some embryos do not survive the biopsy. And there is the chance that those children that do survive the process and are implanted may have life-long health problems. PGD is clearly about what the parents want, not about the health of the resulting child.

Genetic testing is meant to provide information to help doctors, nurses and family provide better medical care. It should be a step toward making humanity healthier. Genetic testing goes very wrong when it is used with the intent of discarding the human beings that are not genetically desirable. Unfortunately, eugenic abortion and PGD are often described as eliminating disease. We must remember that PGD and eugenic abortion do not eliminate disease. They only eliminate the human beings that have the disease. This is what makes them inherently immoral.

Posted by Rebecca Taylor in Genetic Testing at 11:04 | Comments (2) | Trackbacks (0)

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Dear MMD,

Your post is very thoughtful and accurate. I appreciate someone taking the time to spell out these categories in terms everyone can understand.

I don't quite agree that genetic testing is morally neutral, however. For three reasons.

The first, in order to get an accurate genetic diagnosis, either amniocentesis or chorionic villus sampling (CVS) must be done. The risk of miscarriage from amniocentesis, which doctors try to do at an earlier and earlier gestation, is about 1/400 depending on which study you believe. Some studies show the rate of pregnancy loss as being much higher. The risk of miscarriage from CVS is about 2%, much much higher.

Why would someone undertake such a risky, invasive procedure when ultrasound (U/S) rarely misses a baby with a serious abnormality and U/S is safe? No risk of miscarriage with U/S. In general, if a baby has an abnormality serious enough to require immediate care after birth, U/S will pick it up. Their is no in-utero treatment for a genetic problem to justify its risk.

I've had a patient get the result of her amniocentesis showing a normal baby on the day she miscarried the baby from a complication of the amniocentsis. I've had pro-life women undergo prenatal screening (quad screen it is now called--a blood test on mom--no risk to the baby) which returned abnormal, frightening her into amniocentesis which resulted in miscarriage of her normal pregnancy. The quad screen has a high false positive rate.

So genetic testing is not a benign walk-in-the-park. It carries real risks and should never be undertaken without good evidence that there would be some problem amenable to in-utero treatment or treatment shortly after birth in my view.

The second reason is that prenatal diagnosis would disappear from the face of the earth without abortion-on-demand. I've read abortionists comments to that say exactly that. The number of women who go through the whole process of genetic diagnosis including amniocentesis or CVS, find a baby with a handicap and chose to continue the pregnancy is very small. (Sarah Palin being an exception, although I do not know if she had an amniocentesis.) The abortion industry is the fire beneath prenatal diagnosis keeping it going.

The third reason is that there is no such thing as "non-directive counseling" which is what prenatal diagnosis clinics are supposed to provide patients if the amniocentesis returns showing a baby with a handicap. I have had patient after patient describe the pressure placed on them by the "neutral" genetic counselors to end the baby's life. And if the patient said no to abortion, the genetic counselor would repeat the whole senario thinking the patient was too stupid to understand the correct decision, which was abortion.

So, your post is technically correct. But the real life horror this procedure does little but line the pockets of the abortionists.

#1 MD Views (Homepage) on 2009-01-06 16:00 (Reply)

Thank-you for your thoughtful comment. I agree that prenatal genetic testing has its pitfalls and I certainly do not think genetic testing in general is a benign walk-in-the-park which is why I repeatedly say that ANY genetic testing needs to be followed up with good genetic counseling.

With this post, I wanted to clear up any confusion of when genetic testing is inherently immoral. I simply wanted to point out the kinds of genetic testing that are ALWAYS morally wrong.

#1.1 Rebecca Taylor on 2009-01-06 17:17 (Reply)

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