The Magazine of The Evangelical Lutheran Church in America


Putting genetics to the test

The limitations of a promising new technology give pause to those who consider screening

Genetics affects every aspect of our lives: hair and eye color, our ability to build an insulin molecule, which medications work on our high blood pressure. Some families have hereditary short stature, schizophrenia, or high risk for breast or colon cancer.

When all is going well, we live in awe of the complex process by which life moves forward. When problems exist, we may grow fearful. The psalmist said more than he knew when he exclaimed the wonder of it:

For it was you who formed my
inward parts;

you knit me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works; that I know very well.
My frame was not hidden
from you,

When I was being made in secret,
Intricately woven in the depths of the earth (Psalm 139:13-15).

The application of genetic knowledge and technology to our lives is a wonder in itself. As in other areas of technology, sometimes applications run ahead of ethical thinking. What's possible may not always be morally attractive, but we may think we should do it because we can. Prayerful application of Christian values to practical problems may lead us in directions we hadn't thought possible.

Going forth in faith

Lisa and Jason Fralish, members of Faith Evangelical Lutheran Church, Glen Ellyn, Ill., face genetic risk factors that became important as they considered having a child.

As a member of their congregation and as their geneticist, I worked with them as they reconciled their genetic risks with their desire to have a child.

Lisa has relatives who are (or were) affected by muscular dystrophy, which is carried on the X chromosome and thus affects males within the family tree. Females, although not affected, may carry the mutation.

The family took tests to determine which of the women were carriers, but Lisa's results were inconclusive. Coincidentally, Lisa also carries a mutation for cystic fibrosis, another serious genetic condition.

 Jason doesn't carry any detectable mutation for cystic fibrosis. But 10 percent of carriers are undetectable, so we can't be certain of his status. A child is at risk for that disease only if both parents are carriers.

Using current tests, we can't determine with certainty whether a pregnancy is affected by cystic fibrosis. An amniocentesis would have allowed us to check for Down syndrome and other chromosomal abnormalities, but the Fralishes chose to forego this test because they didn't face increased risks for these, and testing couldn't assess the muscular dystrophy gene. If we had performed an amniocentesis that showed she was carrying a male, we could have performed a fetal muscle biopsy to determine whether the muscle was normal. This is an invasive test with risks for complication.

"For many years we struggled with our decision," Lisa says. "Maybe we had no business having children. However, it felt unnatural to choose not to have a family. ... The more we deliberated, the more overwhelmed we became. We would often question whether more information is too much."

Lisa and Jason said sermons by their pastors, Kenneth Stenman and Philip Stringer, and the Focus on the Family radio program helped guide their decision about whether to have a child. "We finally decided to accept our risks, trust our faith in God and move forward with starting a family," Lisa says.

The couple resolved to take their pregnancy full-term regardless of any test results, so they chose to forego further testing.

"During pregnancy I felt at peace," Lisa says. "I even had a dream in which Pastor Stenman put his hands on my shoulders and told me that I was going to have a big healthy beautiful boy."

Their son, Isaac, is doing well at 12 months. We have no reason to think he has either genetic disease.

Lisa and Jason say Isaac brings them constant joy and laughter, but they wonder whether they should have another child. "We had a lot of faith with Isaac," Lisa says. "He is an absolute blessing to us. It's difficult to go forward with another pregnancy."

Now we're determining whether recent technology might clarify Lisa's carrier status for muscular dystrophy. An affected family member donated a blood sample in the hope that the exact mutation might be pinpointed. If so, we can try again to learn if Lisa is a carrier.

Family responsibility

When people learn they are carriers of a genetic disorder, do they have a moral responsibility to advise relatives? Most moral philosophers and theologians think they do, and I agree. Lisa's family gives a high level of support, which makes complex decision-making easier. Her sister was quick to tell of the surprise additional risk factor for cystic fibrosis, and Lisa learned she is indeed a carrier of the same mutation.

But many families are torn apart by early parental death, divorce or disagreements — wounds that may interfere with communication about genetic risks. If communication is good, or can be restored, newly discovered risks might provide an opportunity for healing old breaches.

Support from pastors and fellow believers, in a faith community that responds to the opportunity for caring, is also important.

Moral & theological questions

Most of us realize it would be ridiculous and wrong to use genetic technology and abortion to guarantee or avoid a certain hair color in our children. Most of us appreciate that termination of pregnancy may be a good choice (although not the only possible good choice) when testing reveals a condition so severe that the baby will die within hours of birth.

But what about a nonlethal condition that renders the child mentally and/or physically hindered? Does terminating such pregnancies mean we have turned away from the gospel's call to care for the poor and weak?

If parents use genetic testing to avoid the birth of a second child with a genetic disease, what message does this send to the first affected child? Which abnormalities are significant enough to justify termination?

For many people the issue isn't termination at all but knowing sooner whether there are challenges that might lead to different options and improved outcomes.

Christian moral responsibilities in addressing our genetic input to our children are complex and far-reaching. The capacity for suffering is crucial, both for parents and children. Financial, psychological and other resources should be assessed as well.

The Fralishes' story illustrates several important points. Some individuals prefer not to know their genetic risk status, while others choose awareness. Some are anxious to know as much as possible, as soon as possible. Others want only part of the information. Some are prepared to stop a pregnancy with an abnormality if the condition is sufficiently severe; others find that choice unacceptable.

How and where we draw the lines in regard to seeking genetic information has much to do with our self-image and our sense of being called to creativity and holiness in the gospel. Do I want to take into my own hands as much as possible of the decision process, or do I prefer to throw myself on God (or fate) and await what comes?

Lisa and Jason Fralish chose to step back and wait. That seemed like the most prudent and faithful approach at the time, and they are pleased with the outcome.

But now, as they consider a second pregnancy, they are contemplating whether a greater degree of information-control is not more to their liking, comfort and faith. A person or family may cross from one perspective to another as time and life experience move forward.

Such is the journey of faith. It's wonderful; with grace, we hope that it may not be fearful.


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