Four years ago Suzanne Bessette-Smith and her husband, David Smith, decided to have a child. Three years ago they still were waiting for a positive pregnancy test.
They stepped up their efforts, eventually seeking help from a reproductive endocrinologist. Under his care, Bessette-Smith consented to five rounds of mood-changing hormone therapy to stimulate egg production, painful procedures to retrieve eggs for in vitro fertilization and three surgeries to put fertilized eggs into her tubes or uterus.
They shared ”the roller-coaster ride and the ultimate disappointment,”
Bessette-Smith said. The Wheaton couple spent $25,000 and all of their hope, but never conceived a child. Last October they stopped trying.
Bessette-Smith and her husband are among the unlucky 35 to 40 percent of America`s infertile couples who, according to the American Fertility Society, will never conceive.
The balance will eventually conceive using some form of medical technology, such as hormone therapy, according to the fertility society, a Birmingham, Ala.-based non-profit national organization of physicians and infertility specialists.
Less than 25 percent of those couples will seek more advanced treatment, such as in vitro fertilization, said Joyce Zeitz, fertility society spokeswoman. Those treatments, she said, helped produce about 16,000 babies in the last 10 years.
While those technologies improve infertile couples` chances of having babies, they present a plethora of ethical decisions.
In the last 25 years, infertility rates have held steady, affecting one in every 12 couples. Over the same time, however, the number of infertile couples has increased more than 30 percent because of the Baby Boomers in their child-bearing years and those who have postponed efforts to conceive.
The numerous doctors treating infertility and the variety of available treatments also ”have increased people`s awareness of infertility without increasing its incidence,” said Dr. William Mosher, a statistician with the National Center for Health Statistics.
The incidence of ethical decisions expands in proportion to the number and complexity of medical procedures available, according to Roy Shlagman, president of the Chicago chapter of RESOLVE, a national non-profit support group for infertile couples. Most of those decisions are personal, some become a matter of public policy and many are a blend of the two.
For example, how much is conception worth in terms of time, pain and money? Should insurance companies and their customers shoulder part of the cost? Does society-or do taxpayers-have a moral obligation to help?
Infertile couples-those who fail to conceive after 12 or more months of sexual intercourse without contraceptives-typically undergo eight or more infertility treatments in a year, depending on the rigors of their chosen treatment, Shlagman said.
Most pursue treatment for three to eight years before succeeding or giving up, he said. They can consent to any of about a dozen reproductive technologies, ranging from $100 for one artificial insemination to $12,000 for one attempt at in vitro fertilization, which involves collecting eggs and sperm, mixing them in a laboratory dish and then, if fertilization occurs, implanting the resulting embryo several days later.
In the Chicago area, Shlagman and his wife, Sherry, are among ”dozens of couples who`ve taken out second mortgages or sold their homes and put the equity toward treatment,” he said. They ultimately adopted a baby son, Michael.
The Shlagmans and other RESOLVE couples pressed for a state law passed in January that requires insurance companies to cover infertility treatment. Illinois is the 10th state to pass such legislation, according to the American Fertility Society.
Beyond the issue of cost, which procedures are acceptable, which are not? Under what circumstances? And who decides?
Michael Tucker, a reproductive biologist in Atlanta, cites the case of a woman at the end of her childbearing years who sought treatment at his clinic, Reproductive Biology Associates. She no longer could ovulate, so she had her last few eggs fertilized and frozen.
Under typical circumstances, an implantation procedure would have produced a multiple birth, but in this case, the woman had three embryos implanted one at a time.
The first healthy baby was born four years ago. The second was born two years later, and the woman is now pregnant with the third.
Tucker constantly questions the professional ethics attached to his work, he said.
”It`s harrowing,” the Briton said. ”It`s so bloody arbitrary and academic.”
He cited the case of a religious couple who tried a procedure called GIFT, or gamete intrafallopian transfer, in which the healthiest sperms and eggs are collected, mixed and returned to the fallopian tubes, in which fertilization normally occurs. In this case, the sperms were weak, the eggs,
”so-so.”
”You make a judgment in the lab,” Tucker said. ”You say, `Let`s go for broke here, make sure she gets pregnant.”` He returned four embryos instead of the usual three, to the uterus, counting on less than the 60 percent implantation rate achieved with in vitro fertilization.
”She wound up (conceiving) quads (quadruplets),” Tucker said.
Against their strong religious beliefs, the couple chose to abort two fetuses to increase the survival chances for the other two fetuses.
”This is supposed to be pure science,” Tucker said. ”But it comes closer to French cuisine. You`ve got to taste and adjust every step of the way. You just can`t predict outcomes. The number of sperm and eggs we take and replace, or freeze and replace, it`s all based on these terribly subjective, personal decisions we make.”
Decisions made in infertility treatments are not governed by federal standards, and there is no federal money to support research in the field. In fact, a current federal regulation requires that any funding proposal for research on human in vitro fertilization must be approved by the federal Ethics Advisory Board, which was disbanded in 1980.
The American Fertility Society and the American College of Obstetricians and Gynecologists have developed ethical guidelines for infertility treatments. However, no medical or review boards specifically address these ethical issues, according to Joyce Zeitz, fertility society spokeswoman. Consequently, the issues sometimes are decided in court.
In January U.S. Rep. Ron Wyden (D-Ore.) introduced a revision of the Fertility Clinic Success Rate and Certification Act. It would establish a model for certifying embryo laboratories.
States choosing to adopt the model program could certify labs on the basis of the model standards, which would govern staff qualifications, quality assurance, record keeping and success rates with the two most frequently used infertility treatments, in vitro fertilization and gamete intrafallopian transfer.
U.S. Rep. Norm Lent (R-N.Y.) recently co-sponsored the bill, giving it bipartisan support. Further congressional action is uncertain.
Another bill, which the Senate Labor and Human Resources Committee passed 10-4 on Feb. 5, would authorize the National Institutes of Health to spend $5 million to set up two infertility research centers, three contraceptive research centers and a loan-repayment program. The bill will be referred to the full Senate later in this congressional session.
But clearly, medical technology has far outpaced public policy. Last year a clinic in England artificially inseminated a woman who never had had intercourse-to produce a virgin birth. Australian legislators ordered doctors to find a mother for two frozen embryos whose parents were killed in a plane crash. Grandmothers have given birth to their own grandchildren. And a physician is on trial in Alexandria, Va., charged with artificially inseminating as many as 75 women with his own sperm instead of donor sperm from his clinic.
Despite the Brave New World possibilities, there is relatively little research under way. Federal laws restricting fetal research, lack of money and fear of backlash from the right-to-life movement put a ”chilling effect” on infertility research, said John Robertson, an Austin, Texas, lawyer and member of the American Fertility Society ethics committee.
”The restrictions are not nearly as extensive as researchers think,”
Robertson said. ”There is a great deal more that could be going on that is not now going on.”
Yet some groups, including the right-to-life movement and the Catholic Church, oppose certain aspects of infertility research and treatment.
For example, the Vatican`s proclamation, ”Instruction on Respect for Human Life,” rejects artificial insemination and in vitro fertilization because they separate ”the goods and meanings of marriage,” that is, sexual intercourse and procreation. By doing so, procreation is ”deprived of its proper perfection” and is ”not in conformity with the dignity of the person.”
The fertility society ethics committee responded by saying it concurs with the Instruction`s statement that ”the one conceived must be the fruit of his parents` love,” but said it ”cannot understand how the conclusion is drawn that this love must, in all circumstances, mean sexual intercourse.”
Assisted reproduction is ”not a replacement of sexual intimacy but its logical and technical extension,” according to the ethics committee.
Intimacy and personal relationships factor heavily in virtually every infertile couple`s decision to seek treatment, Shlagman said.
Said Margie Morrison, a clinical social worker for RESOLVE: ”Couples have to define what being a parent is. Must a parent make a genetic contribution, or is a parent one who raises a child?”
If the child is conceived with donor sperm or eggs, parents must decide whether, whom and how much to tell, Morrison said. Should the child know? What about family, school officials, friends and doctors?
”Family secrets almost always have some kind of negative connotation,”
she said. ”And children always know. They may not know what it is, but they know there`s something there.”
When infertile couples conceive through any ”unusual” means, whether through ovulation-inducing drugs, donor sperm or eggs or elaborate medical procedures, Morrison urges parents to tell their children in a positive light as soon as possible.
For example, she and her husband, Mark Zivin, told their toddler twin sons that they were conceived with their father`s sperm, but that a doctor helped by artificially inseminating Morrison with only the strongest sperm.
For couples using donor sperm or eggs, secrecy can bring physical hazards, too, Morrison noted. In case genetic diseases or defects afflict the child, the fertility society recommends that doctors keep permanent records designed to preserve donor, parent and child anonymity, while providing a way of sharing critical health information. But as the society`s ethics committee notes, ”Currently, the procedures for donor screening, cryostorage (freezing) and allocation of the sperm are extremely variable from facility to facility.”
