Our Bodies, Ourselves (107 page)

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Authors: Boston Women's Health Book Collective

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Surrogacy is a highly complex ART procedure, both legally and ethically. Since 1976, there have been about 25,000 surrogate births in the United States. This includes several high-profile
cases where surrogates changed their minds about surrendering the baby once the child was born. Heart-wrenching public discourse took place in dramatic courtroom settings where the most controversial aspects of ART were debated, sometimes for months or years. In response, Washington, D.C., and Arizona have banned surrogacy altogether, and Michigan, New York, Indiana, Kentucky, and Nebraska have declared surrogacy contracts void and unenforceable.
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TELLING THE CHILDREN

A growing number of women and couples struggling with infertility are choosing to use donor sperm or donor eggs to conceive a child. These technologies have allowed millions of people the opportunity to have a family. They also raise complex questions about the role and importance of genetic ties and the rights of children conceived with donor gametes.

In the past, parents were advised to keep using a donor a secret, perhaps thinking this would protect the couple from embarrassment. Today, the results of surveys of thousands of offspring conceived via sperm donation show that such secrecy can cause great distress.

An increasing number of people are recognizing that children conceived using donor sperm or donor eggs—like children who are adopted—deserve to know their origins and genetic histories. Organizations such as the Donor Sibling Registry (donorsiblingregistry.com) and the Infertility Network (infertilitynetwork.org) offer excellent books, newsletters, video documentaries, support groups, and seminars (live and on DVD) to help families deal with the issue of disclosure.

THINKING ABOUT INFERTILITY
INTIMACY AND INFERTILITY

We were supposed to make love at seven o'clock in the morning, and then I had to run to my doctor's for the postcoital test. Who feels like making love at seven in the morning during a busy week anyway?

During the months or years of testing and treatments, you will have to plan your sex life around your menstrual cycle and fertile days. Documenting when you have sex and having sex at prescribed times may make you feel as if nothing is private or sacred in your life anymore.

Many couples find that spontaneity in lovemaking decreases. Men may experience performance anxiety and be unable to get an erection. Women may feel physically violated, due in part to the increased amount of prodding and probing experienced in the exam room.

Though many couples find their relationship grows stronger during infertility treatment, even the strongest of couples may experience pain and confusion. No matter how difficult it is, try to find a way to stay intimate. Concentrate on pleasure for pleasure's sake. Focus on all the good and positive aspects of each other. Remember that there is a life beyond infertility.

HEALTH RISKS OF INFERTILITY TREATMENTS

There are risks associated with taking any medication or undergoing a medical treatment, especially when anesthesia or surgery is involved.
Many people feel that the potential risks associated with fertility treatments are worth the opportunity to possibly become a parent.

COMPLEMENTARY AND ALTERNATIVE TREATMENTS FOR INFERTILITY

Complementary and alternative treatments such as massage therapy, acupuncture, traditional Chinese medicine, herbs, vitamins, mind-body approaches, yoga, visual imagery, and relaxation techniques may improve your ability to manage treatments and cope better with the emotional challenges they present. Some research suggests that some of these treatments might also improve your chances of becoming pregnant, but unfortunately there is little high-quality research.

Still, more and more fertility clinics are including complementary and alternative treatments alongside conventional medical options. Other clinics have developed relationships with practitioners or programs to which they regularly refer patients. If you chose to utilize complementary and alternative therapies, try to find a provider who is well trained (and licensed when appropriate) and experienced and has a solid reputation within the fertility field. For more information, see
“Complementary and Alternative Therapies.”

The most common and underappreciated risk of infertility treatments is multiple gestation pregnancies. Women who undergo infertility treatments are much more likely to become pregnant with more than one fetus than women who conceive naturally. ART-conceived infants account for about 1 percent of all infants born in the United States, but they account for about 18 percent of twins and triplets. Multiple gestation pregnancies, including twin pregnancies, pose increased risks for pregnancy complications, premature delivery, low birth weight, long-term disability among infants, and even infant death.
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In ART, multiple births are largely due to the practice of transferring multiple embryos back into the uterus during IVF. They are preventable by limiting the number of embryos transferred. In the past few years, the American Society for Reproductive Medicine and the Society for Assisted Reproductive Technology have issued increasingly stricter guidelines for the numbers of embryos that should be transferred back into the uterus. The fertility clinics have been responsive: in 1996, more than 60 percent of ART procedures entailed the transfer of four or more embryos, whereas in 2008 that proportion was reduced to 14 percent. Currently, the largest number of procedures entails the transfer of two embryos. This trend has had an important impact on the number of high-order pregnancies. In 1996, 7 percent of ART births were triplets or higher-order multiples, and this proportion came to slightly less than 2 percent in 2008. That is the main reason why the number of high-order multiples has declined nationally since 2003. What has not happened, however, is a decrease in the number of twin births in ART: this can be accomplished only by promoting
single-embryo transfer
, and the United States has been slow at adopting this standard of care. The percentage of single-embryo transfers increased from 6 percent in 1996 to 12 percent in 2008. In contrast, in Sweden about 75 percent of embryo transfers are now single-embryo transfers. In Japan, all women under 37 years of age who have experienced no previous failure with ART must transfer only one embryo.

THE EVOLVING FIELD OF INFERTILITY

The field of infertility diagnosis and treatment is evolving rapidly. As drug companies, hospitals, and physicians introduce new technologies and drugs into medical practice and the marketplace, diagnoses and treatments of infertility continue to change. New causes of infertility will likely be revealed as we learn more about environmental toxins and about how our genes interact with the changing environment.

Unfortunately, new techniques and treatments are rarely studied in controlled, randomized trials that could establish their safety and effectiveness. Some procedures used today are tried and true; many others are still considered experimental. Practitioners will agree about the efficacy of some drugs and procedures and differ about others.

You have a right to know whether your treatment is new or experimental and whether and how it has been studied scientifically. You also have the right to know about the possible risks and side effects of each treatment and about the amount of time and money that will be required. Try to determine the safest and least invasive treatments. Whenever possible, develop with your doctor a written course of treatment, including when to stop, that is tailored to your needs. And work to understand all you need to know to give truly informed consent to diagnostic and treatment approaches.

As a growing number of clinics in the United States limit the number of embryos implanted, an increasing proportion of multiple births will be the result of using injectable fertility medications that hyperstimulate ovulation. When too many eggs develop and are fertilized through either regular intercourse or an IUI, a multiple pregnancy results. Many families pursue injectable medications over IVF because of cost. Infertility treatments are usually not covered by insurance. Though still expensive, fertility medications alone are a fraction of the cost of an IVF cycle. The high out-of-pocket expenses associated with fertility treatments cause many to try to cut corners to build their families as quickly as possible, including taking fertility medications without proper monitoring or fully understanding the risks involved.

Unfortunately, there is still much that is unknown about the other risks various fertility treatments pose to women and the children born from these procedures. Good-quality research that follows large numbers of women and babies for long periods of time is needed. The Infertility Family Research Registry (IFRR) is a nonprofit organization that monitors and advocates for research on the health of people and families that have faced a diagnosis of infertility or dealt with infertility treatments. For more information about the IFRR, visit ifrr-registry.org.

THE ETHICS OF FERTILITY TREATMENTS

Assisted reproduction can raise complicated ethical challenges for the individuals involved, health care professionals, and the greater society. Infertility treatments today create new definitions of parents and children and require a rethinking of the conventional notions of
family. For families facing infertility, decisions about family building become complex.

One ethical dilemma associated with ARTs involves the politics of embryos and what to do with unused embryos. Many couples fertilize as many eggs as they can during their treatments and freeze any remaining embryos for later use. It's estimated that about a half a million cryopreserved embryos are being stored in fertility clinics across the United States. Many are eventually used for family building, but many remain unused, and often couples are ill equipped to make a decision about what to do with their embryos once their families are complete. Some just stop paying the storage fees or lose contact with the clinics. For both ethical and legal reasons, clinics are reluctant to dispose of embryos without a couple's consent. Couples who want to donate them to research are confused by varying laws and restrictions stymieing their ability to donate. Very few couples opt to donate their embryos to other couples due to lack of education about the option and ethical and moral concerns about giving one's genetically related embryos to an unknown couple. Moreover, many couples have a hard time coming to terms with permanently disposing of them, even through a compassionate transfer in which the remaining embryos are thawed and placed into the vagina at a time when conception is not possible.

It's important for couples to think about what they will do with their remaining embryos before they undergo fertility treatments and begin to create embryos. If not, they may struggle with the uncertainty about what to do with them for years or even decades. Further conflict occurs in situations of divorce or death. Laws are not consistent from state to state about who is ultimately responsible for embryos and what can be done with them. Given the length of time some embryos have been cryopreserved, some people have even included them in their wills, further delaying any conclusion.

Third-party reproduction, in which another person enters into the baby-making mix, also involves risks and raises many important ethical concerns. Though the FDA ensures the overall safety of the gametes, there is much more involved with such treatments than the passing of genetic material from one person to another. There is no consensus about how to appropriately and ethically recruit donors and surrogates or how to eliminate the risk of coercion or exploitation. Since money (often large amounts) is exchanged, commodification of reproduction is suggested. Furthermore, there is no guarantee that donors and surrogates fully understand the risks involved or are able to provide informed consent, especially given the lack of standards for education and screening. Further complicating matters, the intended parents pay for all costs involved, creating a great deal of pressure for donor programs and surrogacy agencies to quickly find matches for their clients—the intended families—and creating a conflict of interest in terms of whose interests are being protected. Even though recommendations exist as to how many times one can donate or be a surrogate and under what conditions, they aren't enforced.

Some women's health activists have concerns about the health risks to egg donors from using the drugs that stimulate ovulation. There is a lack of long-term safety data and too little research on the serious, occasionally irreversible problems experienced by some women using the drugs. Some people fear that the risks of egg donation have been underplayed and feel that regulations are needed to better ensure that the long-term consequences of donation are better understood. Several advocacy groups are calling for a national egg donor registry to better track the effects of these drugs.

In addition, there has been little research on what happens to donors, surrogates, intended families, and children after donation or birth—physically
or emotionally. People who have built their families through collaborative reproduction are not followed. There is also no method for donors to contact families they helped to build or vice versa later on. This is especially concerning if a medical need arises or information about their own personal or family health history changes. In fact, most sperm and egg donors never know if their donation even resulted in a pregnancy. We need to know more about what happens down the road for donors, surrogates, recipient parents, and their children so we can minimize any negative consequences, including unintentional ones.

Treating infertility in the United States has become an extremely technical, competitive $4-billion-a-year business.
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Physicians providing treatment are often also business owners aware of profit margins. Many fertility clinics feel pressure to produce statistics that show potential patients the highest possible pregnancy and birth rates. This sometimes affects their choices regarding treatments. Likewise, fertility doctors struggle with trying to appease patients (rather than lose them to another clinic) who want to proceed with certain treatments when the chances of a good outcome are remote and other more appropriate options such as using donor eggs, surrogacy, adoption, or stopping treatment do not appear to be acceptable.

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