"I feel that Fetal Alcohol Syndrome is one of the most unethical issues school districts are dealing with." This statement was made recently by someone who is taking a college philosophy class who wants Fetal Alcohol Spectrum Disorders (FASD) to be the subject of his report on ethics. I don't think this student meant to imply that FASD per se is unethical, but that there are questions of ethics that do arise that are directly related to FASD.

Fetal Alcohol Syndrome (FAS) in itself is not a matter of ethics, it is a medical diagnosis. But there might be several issues related to FASD that could be considered from a perspective of ethics. I can easily think of at least a dozen off the top of my head. I'm sure there are more. Here are the questions that I have been asked in recent years, and my comments.

Is it ethical to refer to drinking during pregnancy as "child abuse"? I guess that depends on whether a woman knows she is even pregnant, what her doctor has told her, and how much control she has, if any, over her drinking behavior. Exposing a baby of any age, before or after birth, is dangerous and risky for the baby. But I do not know any birth mothers who intentionally inflicted harm upon their developing baby.

Is it ethical for doctors to tell their pregnant patients that it's okay to have a drink or two a day when pregnant? Absolutely not. The medical profession has known about the dangers of alcohol consumption during pregnancy for almost 30 years, yet very few curriculums in medical schools include accurate, adequate information on FAS.

Is it ethical to serve alcohol at a party, reception, dinner, etc. to women of childbearing age? If a woman is sexually active and fertile, even if she is using birth control, she could be pregnant and not be aware of it. But surely we cannot ask a woman if she is sexually active or if she is sterile!

Is it ethical to not say anything when a visibly pregnant woman is seen drinking alcohol? Legally, we don't have any right to tell her what to do. The unborn child has had no legal protection since Roe vs. Wade.

Is it ethical to lock up a woman who is pregnant and drinking? This is done in some Native American communities that are immune from civil liberty statutes.

Is it ethical to punish a woman for something that she may not be able to control? Considering the nature of alcoholism, perhaps we need to look at the causes of why she is drinking in the first place. According to one study (reported by a well-known doctor in Madison, Wisconsin), more than 90% of women who have given birth to babies with FAS were once victims of sexual abuse.

What if the pregnant drinker is alcohol-affected herself? A young adult female with Fetal Alcohol Spectrum Disorder is at high risk of having unprotected sex and of drinking during pregnancy. Among women with FASD, the rate of substance abuse is 70%. They have little control over their impulses and have poor judgment (both direct results of brain damage from prenatal alcohol exposure) and are therefore at risk of becoming victims of sexual assault and inappropriate sexual encounters and unhealthy sexual relationships.

How can we blame someone who suffers neurological dysfunction that interferes with their ability to control their behavior? Who do we hold accountable? The partner, friends, family who encouraged her to drink, thus leading her to become an alcoholic? The alcohol advertisers who appeal to youngsters who cannot make rational choices on their own and are easily influenced by the media? The alcohol industry and their lobbyists who prevent passage of laws that might result in lower drinking rates among future mothers? The members of society that look the other way when presented with evidence that alcohol is a destructive and dangerous drug, choosing rather to see only the myth presented by media that "alcohol is healthy for you"?

Is it ethical for social service agencies to place a child with a foster/adoptive family without revealing that the child was exposed prenatally to alcohol and is at risk of having Fetal Alcohol Spectrum Disorders? If they don't tell, the child is at high risk of serious problems later that the family may not be able to cope with. If they do tell, many families will choose not to adopt and the child could remain lost in the system with no chance for overcoming potential secondary disabilities.

Is it ethical for a family doctor to disregard symptoms of FASD because it is embarrassing or uncomfortable to confront a birth mother with information that would lead to unbearable guilt to discover that her actions caused her child's disabilities? Some birth mothers who have been in recovery, overcome denial, and recognize the symptoms in their child have asked the pediatrician, only to be told that their child is normal, when clearly the child has visible symptoms of FASD.

Is it ethical to deny an official diagnosis in cases where alcohol exposure during pregnancy is suspected but not documented? Most women who drink during pregnancy deny that they drank, an understandable reaction to the blame that has been placed on birth mothers. Most adoptive families do not have access to prenatal history of the child.

Is it ethical to allow a woman who has FASD to choose to get pregnant and bear a child she may not be able to care for? Is it right to encourage her to have an abortion? If she abstains from alcohol, the child will not have any FASD problems, and men and women with FASD have been known to be caring, loving parents; they just require intense, long-term support services to maintain a healthy home environment.

How do we deal with children who have FASD who just cannot seem to behave? Do we blame the parents for poor parenting skills? This is universal. But Dr. Ann Streissguth, a leading FAS researcher, has stated that the behavior of children with FASD seems to be problematic whether the child is raised in a stable foster/adoptive home or with the birth family, it makes little difference. Dr. Ed Riley's research indicates that teens with FASD have stunted social development, around 5 or 6 years old. How do we discipline a 12-year-old child who has the social/moral development of a first grader?

Is it ethical to spend special education dollars on teaching children with FASD who will just forget what they have been taught anyway? They do forget, but they do learn, if the appropriate strategies are applied, and they can remember when given the cues they need when they need them. They can accomplish great objectives, if they have the proper encouragement and extended support.

Do we hold a person with FAS accountable when he/she breaks the law? Do we arrest a person for a crime they commit when they lack the ability to control their impulses and when their judgment is impaired and they have the social/moral development of a 6 year old, even when they have normal intelligence? They know right from wrong, they understand there will be consequences when they break the law, they are arrested and imprisoned over and over, yet they are not able to learn from the consequences.

Do we treat a 15-year-old child as an adult in the criminal justice system? What if the child shot and killed his mother and shot and injured his father and brother, just because a friend told him to? This is an actual case in Arizona. The adoptive parents were not told of the child's potential to be alcohol-affected, which he is, and did not receive support services that might have prevented this tragedy. The child is now 16 and is being tried as an adult.

Is it ethical to allow individuals to lie, cheat, steal, or worse - just because they have FASD - and otherwise act on impulse without any consequences? How do we determine what is just punishment? How do we put into place a system that would protect society from these individuals? That would protect these individuals from their disability? If their lack of impulse control and poor judgment indicates that they require close supervision (24/7 in many cases), who decides that? Who pays for it? Is that fair to restrict them of their freedom? Is it fair not to?

In North America, it is estimated that one out of every 100 babies born is seriously affected by prenatal exposure to alcohol. This is not surprising, when you consider that about 25% of newborns were exposed to alcohol and other drugs in the womb. Half the women in our culture of childbearing age are drinkers, and about half of all pregnancies are unplanned. Out of the babies who are exposed and affected, only 11% of cases of FASD are recognized and diagnosed before age six. There may be even more cases where the cause of the behavior problems are never recognized. We don't really know how many individuals are actually affected. Studies in Canada indicate that between 25% and 50% of prisoners are alcohol-affected. How many of the homeless are FASD? I can only imagine, when I drive downtown in Tucson and notice that 4 out of 5 homeless men I see pushing their grocery cart are short and slim (characteristic of full FAS), that perhaps under the beard is the smooth philtrum and thin upper lip.

What can we do to help these individuals? How can we help to prevent the serious secondary disabilities that are common in adults with FASD? Studies show that children with FASD are at high risk of dropping out of school, or getting kicked out before they graduate; of getting into trouble with the law; of engaging in behaviors that are sexually inappropriate (as victims or perpetrators or both); of abusing alcohol and other drugs; of developing depression and suicidal tendencies; of engaging in unprotected sex that results in unplanned pregnancies, many of which result in babies that are alcohol-exposed as well.

Is it ethical to deprive individuals with FASD the services they need to succeed? There are services available for children with developmental disabilities, but in most states (including Arizona), the child must have an IQ of 69 or below to qualify. The average IQ for full FAS is 79, so most individuals with the full syndrome do not qualify for DD services, although their ability to function in life is seriously impaired. Federal criteria are based more on functional ability, but it is still difficult to qualify for services, and for those who are lucky enough to qualify, the services are either not available (lack of funding for social services) or are inappropriate and therefore ineffective (due to lack of information or misunderstanding about the disorder).

If there are not adequate services to provide needed support for the children when they are young, whom do we blame when they end up in prison or in treatment centers later? Is it the government's fault? The legislators are cutting budgets, and social services are getting some of the biggest cuts. Do we blame the economy? Shall we point the finger at Bin Laden because we don't have enough money to meet budget needs? Or do we look at where and how the money we do have is being spent? Do we blame the drinking pregnant mother? Or do we look at all the factors that led her to that path? Do we look at our own attitudes about our culture's number one health issue - alcohol abuse? Does anyone take seriously the medical advice to limit drinking to just two units a day, just one for women, none if there is any possibility of becoming pregnant?

Is it right to blame anyone? Going back to the first question about calling prenatal exposure to alcohol "child abuse" - we cannot blame the birth mother unless we are prepared to take the blame with her, to be accountable for our part in the social situations that predisposed her to be a drinking mother. We need to stand beside her, protect her, assist her in living a healthy life style. The best way to do that is by example. Especially for those at highest risk for brining babies with FASD into the world, those who have FASD themselves. They learn by imitating the behaviors and actions of others. What are we teaching them?

What am I personally doing to create a healthier environment for those in my family? I threw out the bottles of Kailua and Bailey's years ago. I made a commitment to continue to raise my children in a home that is alcohol free. We don't drink, buy, store, or serve alcohol in our home or in our family. We socialize with non-drinkers. We do not totally avoid situations where alcohol is served or consumed, but we do discuss what we see, the results of intoxication and the potential for negative consequences. I not only increase the awareness of the dangers of drinking during pregnancy, but the dangers of using drugs in general. Alcohol is a drug. It's a legal drug that has been glamorized and idolized. Alcohol is a drug that has been pushed to our young people, to women, to vulnerable adults, to our unborn children.

So, what is right or wrong when it comes to FASD? Now that you have become more aware of all these issues that touch on the ethics of FASD, is it right for you to ignore this information? Is it right for you to go about your life without raising awareness and bringing insight to others in the near future? Is it right for you to keep silent the next time alcohol is the subject of discussion? I challenge you to take responsibility for your own part in preventing further incidents of FASD. Print out a brochure and share it with someone. Vote for a candidate who supports social services and education. Buy a T-shirt and become a FAS Star. Read a book about FAS. Volunteer with your local FAS Center. Plan a workshop. Show a video to students. It's the right thing to do.

References:

Loops, Karen Q. B.A., and Nettleman, Mary E. M.D., "Obstetrical textbooks: Recommendations about drinking during pregnancy," American Journal of Preventive Medicine Volume 23, Issue 2 (August 2002)

Machelor, Patty, "Judge rules teen competent for trial in mother's death," Arizona Daily Star, Thursday, 18 April 2002.

Streissguth, A.P., Barr, H.M., Kogan, J. & Bookstein, F. L., "Understanding the Occurrence of Secondary Disabilities in Clients with Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE)," Final Report to the Centers for Disease Control and Prevention (CDC), August, 1996, Seattle: University of Washington, Fetal Alcohol & Drug Unit, Tech. Rep. No. 96-06, (1996).

Streissguth, A.P., & Kanter, J. (Eds.), "The Challange of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities," Seattle: University of Washington Press, (1997).

Thomas SE. Kelly SJ. Mattson SN. Riley EP. Comparison of social abilities of children with fetal alcohol syndrome to those of children with similar IQ scores and normal controls. Alcoholism: Clinical & Experimental Research. 22(2):528-33, 1998.

Wilton, Georgianna, Conference Notes: Family Empowerment Network Conference on FAS, Madison, Wisconsin (March 2002).

Links to further research on ethics issues related to Fetal Alcohol Spectrum Disorders:

http://net.unl.edu/newsFeat/med_eth/me_teachers6.html
http://www.ialmh.org/Montreal2001/Sessions/Children_Health_Justice.htm
http://www.scu.edu/Ethics/publications/iie/v1n2/pregnant.html