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Originally posted by annie_81:
University of Washington

FROM: Pam Sowers
(206) 543-3620
sowerspl@u.washington.edu
DATE: April 3, 2002

First cousins face lower risk of having children with genetic conditions than is widely perceived

Cousins contemplating marriage or concerned about a pregnancy arising from their union have often found it difficult to get accurate information about risks to their offspring.

In a paper published in the April issue of the Journal of Genetic Counseling, a task force made up of genetic counselors, physicians and epidemiologists, among others, has evaluated the evidence about risks for offspring for first cousins and provides guidelines for counseling and advising such couples.

The task force was brought together by the National Society of Genetic Counselors. It considered recommendations for various unions of consanguineous (literally, blood-sharing) couples related as second cousins or more closely.

The consensus of the task force and those who reviewed the recommendations "is that beyond a thorough medical family history with follow-up of significant findings, no additional preconception screening is recommended for consanguineous couples." They should, of course, be offered genetic screening tests that would routinely be offered to other couples of their ethnic group.

In part because of social stigma and because marriage between first cousins is prohibited in 30 states and laws on other consanguineous relationships vary, the authors note that many such unions are kept secret.

"Because of widespread misconceptions about the actual level of risk to offspring, some of these pregnancies are terminated and other couples suffer a lot of needless anxiety," said Robin Bennett, lead author of the paper and president-elect of the National Society of Genetic Counselors. Bennett is a certified genetic counselor at University of Washington Medical Center and manages the Genetic Medicine Clinic there.

The paper's senior author is Dr. Arno Motulsky, professor emeritus of medicine and genome sciences at the UW and a pioneer in medical genetics studies.

Relatively few studies have documented actual risks to the offspring of consanguineous unions, the authors note, and many of the studies that have been done are flawed in terms of their relevance for the general population. The task force reviewed all studies published in English in the medical literature, and some additional materials.

What the authors were looking for is the additional risk of significant birth defects (mental retardation or genetic disorders) -- or risk that is more than that faced by the general population of couples. For example, for couples, if the base (general population) risk of genetic conditions is 5 percent, it's the additional risk that is important for consanguineous couples to know.

Although they emphasize that it's not possible to come up with one number for all populations of consanguineous couples, the authors estimate the additional risk to range from 1.7 to 2.8 percent for first cousin unions. From her experience in counseling, Bennett believes these numbers are far lower than most people's perception of the risk.

One reason these issues and questions have come to the fore now is that health care practitioners are seeing more cousin unions in the immigrant population coming to North America from Africa and the Middle East. In some of these societies, the authors note, cousin marriages are actually traditionally preferred and quite common. Better information and appropriate guidelines are especially needed by physicians and genetic counselors who work with these groups so that more objective and culturally respectful services can be provided.

The paper also includes guidelines for screening for the recessive genes that can produce offspring with disorders of metabolism or hearing disorders, among others. In many cases, these disorders can be treated if found early in life. In the same vein, the importance of routine, regular early childhood pediatric care, as set out in American Academy of Pediatrics guidelines, is emphasized for children of cousin unions.

And what about the laws preventing cousins from marrying? The authors note such laws may eventually change as a result of evidence about actual risks.

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Few Risks Seen To the Children Of 1st Cousins

By DENISE GRADY
Published: April 4, 2002
Contrary to widely held beliefs and longstanding taboos in America, first cousins can have children together without a great risk of birth defects or genetic disease, scientists are reporting today. They say there is no biological reason to discourage cousins from marrying.

First cousins are somewhat more likely than unrelated parents to have a child with a serious birth defect, mental retardation or genetic disease, but their increased risk is nowhere near as large as most people think, the scientists said.

In the general population, the risk that a child will be born with a serious problem like spina bifida or cystic fibrosis is 3 percent to 4 percent; to that background risk, first cousins must add another 1.7 to 2.8 percentage points, the report said.

Although the increase represents a near doubling of the risk, the result is still not considered large enough to discourage cousins from having children, said Dr. Arno Motulsky, a professor emeritus of medicine and genome sciences at the University of Washington, and the senior author of the report.

''In terms of general risks in life it's not very high,'' Dr. Motulsky said. Even at its worst, 7 percent, he said, ''93 percent of the time, nothing is going to happen.''

The report is in today's issue of The Journal of Genetic Counseling.

''As genetic advisers,'' Dr. Motulsky said, ''we give people all the various possibilities and risks and leave it up to them to make a decision. Some might decide a doubling of the risk is not something they want to face.''

He and his colleagues said no one questioned the right of people with genetic disorders to have children, even though some have far higher levels of risk than first cousins. For example, people with Huntington's disease, a severe neurological disorder that comes on in adulthood, have a 50 percent chance of passing the disease to their children.

The researchers, a panel convened by the National Society of Genetic Counselors, based their conclusions on a review of six major studies conducted from 1965 to August 2000, involving many thousands of births.

Dr. Motulsky said medical geneticists had known for a long time that there was little or no harm in cousins marrying and having children. ''Somehow, this hasn't become general knowledge,'' even among doctors, he said.

Twenty-four states have laws forbidding first cousins from marrying, and seven states have limits like requiring genetic counseling. But no countries in Europe have such prohibitions, and in parts of the Middle East, Africa and Asia, marriages between cousins are considered preferable.

''In some parts of the world,'' the report says, ''20 to 60 percent of all marriages are between close biological relatives.''

Dr. Motulsky said many immigrants from cultures where cousin marriages are common expect to continue the tradition in the United States, and doctors and genetic counselors should respect their wishes.

Laws against cousin marriage should be abolished, he said. Even though longstanding ones reflect a view that such marriages are ''really bad,'' he said, ''the data show it isn't that bad.''

Dr. Motulsky said researchers did not know why marriage between cousins was viewed with such distaste in the United States. He said some of the revulsion might have stemmed from the eugenics movement, which intended to improve the human race by deciding who should be allowed to breed. The movement flourished in this country early in the 20th century.

It is not known how many cousins marry or live together. Estimates of marriages between related people, which include first cousins and more distant ones, range from less than 0.1 percent of the general population to 1.5 percent. In the past, small studies have found much higher rates in some areas. A survey in 1942 found 18.7 percent in a small town in Kentucky and a 1980 study found 33 percent in a Mennonite community in Kansas.

The report made a point of saying that the term ''incest'' should not be applied to cousins but only to sexual relations between siblings or between parents and children. Babies who result from those unions are thought to be at significantly higher risk of genetic problems, the report said, but there is not enough data to be sure.

The new report says that genetic counselors should advise cousins who want to have children together in much the same way they advise everybody else and that no extra genetic tests are required before conception.

The guidelines urge counselors to take a thorough family history and, as they do for all clients, look for any diseases that might run in the family or in the clients' ethnic groups and order tests accordingly. During pregnancy, the woman should have the standard blood tests used to screen for certain neurological problems and other disorders and an ultrasound examination.

Their children should be tested as newborns for deafness and certain rare metabolic diseases -- tests already given to all newborns in some parts of the country. These are among the conditions that may be slightly more likely to occur in children whose parents are cousins. Some of the metabolic problems are treatable, and children with hearing losses do better if they get help early in life.

Dr. Motulsky said that the panel of experts began working on the cousin question about two years ago after a survey of counselors found a lot of variability -- and misinformation -- in the advice given to people who wanted to know whether cousins could safely have children together.

The president-elect of the National Society of Genetic Counselors, Robin L. Bennett, who is a co-author of the report and a genetic counselor at the University of Washington, said: ''Just this week I saw a 23-year-old woman whose parents were cousins, and she was told to have a tubal ligation, which she did at the age 21, because of the risk to her children. And there's no risk to her children. People are getting this information from small-town doctors who may not know the risk, don't have access to this information and just assume it's a big risk.''

The young woman hopes to have the operation reversed, Ms. Bennett said.

The article in the geneticists' journal includes a personal account from a woman who said she had lived with her cousin for six years, ''and we are madly in love.'' When she became pregnant, she said, her gynecologist warned that the child would be sickly and urged her to have an abortion. A relative predicted that the baby would be retarded. She had the abortion, she said, and called it ''the worst mistake of my life.''

When she learned later that the increased risk of birth defects was actually quite small, she said, ''I cried and cried. ''

The small increase in risk is thought to occur because related people may be carrying some of the same disease-causing genes, inherited from common ancestors. The problems arise from recessive genes, which have no effect on people who carry single copies, but can cause disease in a person who inherits two copies of the gene, one from each parent. When two carriers of a recessive gene have a child, the child has a one-in-four chance of inheriting two copies of that gene. When that happens, disease can result. Cystic fibrosis and the fatal Tay-Sachs disease, for example, are caused by recessive genes. Unrelated people share fewer genes and so their risk of illness caused by recessive genes is a bit lower.

Keith T., 30, said he married his cousin seven years ago and in 1998, frustrated by the lack of information for cousins who wanted to marry, he started a Web site, cousincouples.com. It is full of postings from people who say they have married their cousins or want to do so.

The site highlights famous people who married their first cousins, including Charles Darwin, who, with Emma Wedgwood, had 10 children, all healthy, some brilliant. Mr. T. asked that his full name not be used because he said he did business in a small town and feared that he would lose customers if they found out his wife was also his cousin.

''If someone told me when I was young that I'd marry my cousin I would have said they were crazy,'' he said. ''I thought the idea of marrying your cousin was kind of icky.''

Mr. T. said he was relieved to learn years ago that cousins' risks of birth defects, while higher than those of unrelated people, were still relatively low, and that he and his wife hoped to have children.
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FindLaw Forum: A genetic report should cause a rethinking of incest laws

By Joanna L. Grossman
FindLaw Columnist
Special to CNN.com

(FindLaw) -- Jerry Lee Lewis is notorious for having married his cousin. So are Charles Darwin and Albert Einstein. All three suffered for having violated a widely held social norm against "incestuous" unions. Yet there may be less reason for this norm, and for the laws enforcing it, than was once believed.

A panoply of state laws say cousin marriages are taboo. But a new report in the Journal of Genetic Counseling, described in the New York Times last week, might send state lawmakers back to work revising their incest laws.

The report concludes that cousins can have children together without running much greater risk than a "normal" couple of their children having genetic abnormalities. Accordingly, the report potentially undermines the primary justification for laws that prevent first cousins from marrying or engaging in sexual relations with one another.

The laws regulating incest in different states

Incest in this country is regulated through two parallel sets of laws: marriage regulations and criminal prohibitions. Marriage laws prohibit unions of parties within certain relationships of consanguinity (by blood) or affinity (by marriage). They declare such marriages void from the start.

Criminal laws prohibit marriage and sexual relationships based on the same ties (with the necessary consanguinity and affinity usually defined the same way as in the marriage laws). They penalize those who disobey with fines or imprisonment.

Every state today has a statute defining eligibility for marriage, and each and every one prohibits marriages between parents and children, sisters and brothers, uncles and nieces, and aunts and nephews. Some prohibit all ancestor/descendant marriages, regardless of degree. Four states extend the prohibition to marriages between parents and their adopted children.

Twenty-four states prohibit marriages between first cousins, and another seven permit them only under special circumstances. Utah, for example, permits first cousins to marry only provided both spouses are over age 65, or at least 55 with evidence of sterility. North Carolina permits first cousins to marry unless they are "double first cousins" (cousins through more than one line). Maine permits first cousins to marry only upon presentation of a certificate of genetic counseling. The remaining nineteen states and the District of Columbia permit first-cousin marriages without restriction.

The origins of incest laws

Incest laws in this country have largely religious origins. In England, incest was punishable only in ecclesiastical courts, which ostensibly applied the law of Leviticus prohibiting persons more closely related than fourth cousins to marry. This ban applied equally to relations by blood and by marriage, based on the canonical maxim that husband and wife were one, and therefore equally related to each other's kin.

American jurisdictions departed from English law by declaring incest a crime, as well as a basis for invalidating marriage. However, many states only punished relationships between first cousins and closer, and others only punished relationships of consanguinity, but not affinity.

The modern justifications for incest laws

Today, the justifications given for retaining statutory prohibitions on cousin marriage (and even debating the passage of new ones) are largely based on the fear that such unions will cause genetic problems for the children they produce.

The states that permit cousin marriage only under certain circumstances make this underlying justification clear - since a common thread runs through all their laws. Each requires a showing that the couple will not reproduce (because of age or sterility) or, at the very least, that they have undergone counseling to understand the risks of reproduction.

There are other justifications for incest laws that might be more compelling. Anthropologists Margaret Mead and Claude Levi-Strauss both wrote convincingly in defense of the "incest taboo." Mead characterized the widely held belief that incest is wrong as "among the essential mechanisms of human society."

According to Mead, the taboo has strong benefits: Because certain sexual and marital relationships are categorically forbidden, and the categorical ban is instilled early on in children's minds, children can grow and develop affectionate, close bonds with a wide span of relatives, without the intrusion of "inappropriate sexuality." Children can "wander freely, sitting on laps, pulling beards, and nestling their heads against comforting breasts-neither tempting nor being tempted beyond their years."

Levi-Strauss focused on the benefits of the incest taboo to society at large. The ban on intrafamily marriage forces families to reach outward and connect with other families -- and it is those connections between many different families that make society function.

Possible constitutional challenges to incest laws

Will the new data -- which strongly suggest, for cousins, that the genetic justification does not hold water -- mean that state prohibitions on cousin-marriages are vulnerable to constitutional attack? Certainly, the new data dramatically strengthen the basis for such an attack.

The Supreme Court, in a long line of due process cases establishing the right to make important decisions about family life, has treated the right to marry as fundamental. State laws that significantly interfere with the right to marry have, therefore, been subjected to heightened scrutiny. In other words, states must show that they have a compelling reason for restricting the right to marriage, and that they have chosen means that are closely related to their stated goals.

What will the states assert as the "compelling interests" that justify banning cousin marriage? One might be the desire to discourage reproduction when the children are likely to have significant birth defects. Another might be the desire to preserve intrafamily harmony. (The desire to replicate Levitical law would, of course, not be a legitimate interest for a state, given the Constitution's ban on state establishment of religion). These ends are probably sufficiently compelling under a constitutional analysis.

The problem comes in another component of the constitutional analysis -- the "narrow tailoring" requirement, which tests the closeness of the relationship between the state's chosen means and its desired ends. According to the recent report, children of unrelated parents have a 3 percent to 4 percent chance of being born with a serious birth defect. Children of first cousins have only a slighter higher risk--roughly a 4 percent to 7 percent chance. Thus, the ban on cousin marriages will not go very far toward the general problem of preventing birth defects.

Likewise, the concerns about intrafamily harmony are most compelling with respect to members of the same household, and thus seldom implicated in our culture, where it is fairly unusual for first cousins to grow up in close confines. The potential for family disruption is limited where cousins grow up in separate households and then marry as adults. A few courts have applied this reasoning to invalidate incest laws with respect to couples with no blood relation, like a step-sister and step-brother who became related only as adults when their parents married.

The prohibition of cousin marriages suffers from problems of both under- and over-inclusiveness--flaws that are usually fatal to a statute under heightened scrutiny. These bans are underinclusive in that they do not prohibit marriage in other cases where the risk of producing children with birth defects is significant. Carriers of diseases like cystic fibrosis, for example, are permitted to marry and reproduce with other carriers, even though resulting children have a one in four chance of developing the disease. For most individuals, the decision whether to marry and reproduce in the face of known risks to resulting children is left to their discretion.

The bans are over-inclusive to they extent they prevent marriage for the 93 percent of cousin-couples who will not have children with birth defects. Genetic testing may even allow those couples to prove that they do not carry any of the recessive genes known to become dangerous when doubled. Nonetheless, the broad-sweeping bans on cousin-marriage would still prevent them from marrying (except in North Carolina, which creates an exception for cousin couples that have undergone genetic counseling).

More generally, scientific advances that enable doctors to screen for many potentially harmful genes may render general presumptions about genetic risks, like those embodied in marriage bans, inappropriate. When a particular individual can know his or her specific risk of passing on dangerous genes to children, how can a presumption as to the average person's general risk of doing so constitutionally be applied?

Will cousins be allowed to marry?

Prohibitions on cousin marriage are unique to the United States. Most other countries permit first-cousin marriages without restriction, and the rate of cousin marriages in some countries is as high as 60 percent of all marriages. But that has always been the case, and being unique has rarely motivated Americans to change their ways.

A constitutional challenge to a state's ban on cousin marriage may well be successful, and studies like this recent one will be important to such a case. But even if legal barriers to cousin marriage are removed, the cultural taboo (the so-called "ick" factor) will be harder to remove.

The term "incest" -- which conjures an image of a sexually exploitative relationship between an older male relative and a young girl -- is one barrier to cultural change. Cousin marriages between two adults are not, of course, incestuous in this sense.

Just as the term "bastard" gave way first to "illegitimate child" and later to "nonmarital child" in the literature on unwed parenting, perhaps "incest" could be replaced with more palatable terms like "kinship marriage" or "distant consanguineous relationships."

Beyond nomenclature, cousin marriage faces other barriers. Regardless of widely reported scientific advances, many will continue to believe that cousin couples are destined to produce genetically inferior offspring. Just two years ago, one Maryland legislator spoke in favor of a proposed bill to prohibit cousin marriage, claiming that one in 32 children born to cousins has a birth defect, compared to one in 100,000 born to unrelated parents. Correcting such misperceptions will be important to the success of those advocating for cousin marriage.

Joanna Grossman, a FindLaw columnist, is an associate professor of law at Hofstra University.

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Posts: 3168 | From: If you don't like it, don't look or read it! | Registered: Oct 2006  |  IP: Logged | 

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Originally posted by annie_81:
oh yeah? and thats because AMERICA knows better than the rest of the world and is always right?
yeah sure. lets all behave like AMERICANS. They rule. they are so intelligent and everybody else who behave a different way is so stupid. right.

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Originally posted by ana uhibbuk:
Samarra, I am reaching out to you seeking your assistance.. I know you post alot on this site.. I posted a question tonight, under the category of something about "pulling our legs, etc", only because I was looking at that forum..

I am sure you will be able to answer my question, since I see you on alot of posts.. I actually would really appreciate your help.

A few days ago, while going through the posts, there was one from a woman, who I believe was an American who married a muslim.. I believe she said she was living in Egypt while he went back to the States to work..and she wanted to leave, so she went to the American Embassy in Egypt, seeking assistance and they told her they would not help her because they follow the laws of Muslims.... Many people replied saying she was not telling the truth.. My husband is also Egyptian and when I told him what I read, he agreed that something was wrong.. He wants to read the post, but I can't remember where it was... Do you know where I can find this post? I would greatly appreciate you help......

God Bless

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Posts: 3168 | From: If you don't like it, don't look or read it! | Registered: Oct 2006  |  IP: Logged | 

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Originally posted by ana uhibbuk:
No, that is not the one.. But thanks for your efforts in trying to help.. It was one where I believe the woman was once Christian and coverted to Islam, was living in Egypt because her husband brought her there to live with his family and he went back to the U.S., when she wanted to leave she claimed the American Embassy told her they couldn't help her because they follow Islamic Law, and she would need her husband's permission... Many people posted responses saying they thought this woman was lying.. It was a post from one day last week.

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Posts: 3168 | From: If you don't like it, don't look or read it! | Registered: Oct 2006  |  IP: Logged | 

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Statistics point out that 42 percent of marriages in Egypt are consanguineous involving first and second degree relations

..."statistics indicated that the high rate of handicapped newborns is due to that type of marriage, revealed Dr Adel Ashur, pediatrician and head of the emergency unit at the National Research Center.

One out of every four babies is reported either suffering from Down syndrome, congenital deficiencies, or other infirmities, resulting from the marriage of related parents, explained Ashur"...

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Posts: 61 | From: UK | Registered: Aug 2006  |  IP: Logged |