The Utah legislature took a step last week into territory where state lawmakers rarely tread.

It passed a giving children conceived via sperm donation access to the medical histories of their biological fathers. The law itself stirred no controversy. The oddity was that the legislature ventured into the area of “assisted reproduction” at all.

Assisted reproductive technology (ART) helps infertile couples to conceive. Compared to many other industrialized nations, neither the U.S. nor state governments do much to oversee the multibillion-dollar industry.

“The United States is the Wild West of the fertility industry,” Marcy Darnovsky, executive director of theÌýÌýsaid, echoing a description used by many critics of the regulatory environment surrounding ART.

The federal government requires laboratories engaged in assisted reproduction to be certified by organizations, such as the American College of Pathologists, and to report certain data to the Centers for Disease Control and Prevention (CDC). (One exception to minimal federal intervention: President George W. Bush’s ban in 2001 on the use of newly created embryonic stem cell lines in research.)

States are split about whether surrogacy contracts, usually between prospective parents and an egg donor, are permissible. But other aspects of ART are simply unaddressed by the states. For example, states don’t regulate how many children may be conceived from one donor, what types of medical information or updates must be supplied by donors, what genetic tests may be performed on embryos, how many fertilized eggs may be placed in a woman or how old a donor can be.

Lawmakers are wary of touching assisted reproduction, Darnovsky said, because of the incendiary politics that surround the issue of abortion, which touches on conception and embryos.

In terms of the number of people involved, the issue is significant. The CDC reports that about 12 percent of women of childbearing age have used infertility services and that 1.5 percent of all infants born in the U.S. are conceived using ART.

The first infant conceived through ART in the U.S. was born in 1981. Since then, assisted reproduction has experienced enormous growth. The CDCÌýÌýthat in 2012, more than 65,000 live births in the U.S. resulted from ART, which generally refers to fertility treatments in which either eggs or embryos are handled. That number does not include artificial insemination, which experts believe results in far more births.

Other countries, such as Canada, the United Kingdom, Sweden, Germany and Australia, heavily regulate many aspects of reproductive technology. Many scholars, as well as some who have been through the assisted reproduction process in the U.S., believe this country should do the same.

“I think in the United States we need more regulation of assisted reproductive technologies to protect the rights of children, donors and parents,” said Naomi Cahn, a law professor at George Washington University and co-author ofÌý the book “Finding Our Families: A First-of-Its-Kind Book for Donor-Conceived People and Their Families.”

Cahn believes donor-conceived children should at least have access to full medical information about biological parents, if not information about ethnicity and country of origin. Parents, she said, should have the right to know how many times a donor’s sperm or eggs were used to conceive a child. And donors should have a right to know what happens to their sperm or eggs.

Lack of Regulation Disputed

TheÌýÌý(ASRM) takes umbrage at the suggestion that ART is lightly regulated.

“I used to call it the ‘myth of un-regulation,’ but it’s actually a malicious and often deliberate falsehood most often conveyed by folks with ideological opposition to reproductive medicine,” Sean Tipton, the ASRM’s chief lobbyist, wrote in an email message. “Reproductive medicine is one of the most heavily regulated fields of medicine in the US.”

As evidence, Tipton points out that the federal government regulates all drugs and medical devices, as well as the reproductive tissues used in ART. States, he said, license practitioners (as they do all medical professionals). But the heart of his argument is that “the professional self-regulation is extensive.”

ASRM does issue lengthyÌýÌýto its membership, which consists of fertility clinics and sperm banks. However, critics point out, it does not sanction those who are in violation of guidelines.

Critics argue that ASRM’s main function is to advance the business interests of its members, unfettered by government regulation.

“It’s a field characterized by strong anti-regulatory sentiment because it evolved as a business, not a research enterprise,” said Arthur Caplan, director of the division of Medical Ethics at New York University’s School of Medicine.

Debra Mathews of the Berman Institute of Bioethics agrees that the industry is lightly regulated because “assisted reproduction has grown up as a medical services business not under the auspices of medical research.” The federal government ensured that situation would continue when, in 1996, Congress passed an amendment banning the use of federal funds in research related to the creation of embryos.

There are also political reasons politicians have little interest in taking up ART legislation.

“It is unregulated because it touches on two, ‘third-rail’ issues,” said NYU’s Caplan. “It touches on abortion and also the creation of embryos, which politicians run away from because too many people still disagree about the right to use reproductive technologies, particularly who should pay for them and how much.”

The lack of regulation does have some benefits, critics say. Without regulation, for instance, gay couples and single people don’t face any built-in barriers to using ART to produce children.

But others see disadvantages, none more loaded than a lack of restrictions on the number of children that can be produced by any single donor. The concern is that offspring of a frequent donor could inadvertently meet and fall in love, raising the possibility of “accidental incest.”

Donor-conceived children also argue that donors should be subjected to better medical screenings. Generally, donors are only tested for sexually transmitted diseases. There are no laws requiring medical testing for genetic diseases or requiring that donors – usually in their 20s at the time of donation – update medical information as they age and inherited diseases may surface.

Many donor-conceived offspring believe that they, like their counterparts in Britain, should have a right to more than medical information and that the identity of biological parents should be revealed to them.

Many of those who donated eggs and sperm did so in the expectation of a lasting anonymity. They didn’t want unknown offspring to one day knock on their door.

But in the Internet age, the expectation or anonymity is increasingly diminished. Several websites, such asÌýÌýandÌý, enable those who share the same DNA to connect with one another. Through those websites and other Internet searches, thousands of people have been able to circumvent the anonymity offered by sperm banks and fertility clinics to identify biological parents, half-siblings or cousins.

Donors, Offspring May Drive Action

If there is more regulation in assisted reproduction, it will probably come from those who have gone through the process or were the result of it.

That is what happened in Utah. The sponsor of the bill, Republican Rep. Dixon Pitcher, was buttonholed by an old friend who in her late 60s learned that the beloved, now-deceased man who raised her was not her biological father. The truth unraveled after a nephew with health problems underwent DNA testing.

“It was devastating,” she said. “I think I cried for about three months.” The woman, who asked that she only be identified as “Marie” to avoid embarrassing others, said she has since learned of eight half-siblings, some of whom she has now met.

Through the DNA research and other clues, Marie said that it became clear that the father of all of them was her mother’s doctor. Geneticists say that prior to modern fertility technology, doctors of women with infertile husbands often provided the sperm that enabled their patients to conceive.

Marie said she had hoped Pitcher’s bill would enable donor-conceived children to learn the identities of their biological parents, but she is pleased that at least some medical information will be made available as a result of the new law.

Other people also are clamoring for information about their donations or their biological parents.

Katie Graves of northern Virginia, for instance, said that 17 years ago, she underwent egg retrievals four times, and was paid about $3,000 each time. Later, she said, she was unable to learn from the clinic the dosages of hormones and medications that had been used in her case. And she said she was denied any information about whether her donation had resulted in any births. Through a DNA matching website, she learned in January that she had a 16-year-old biological daughter.

Martin Garrison made donations to a sperm bank that was recruiting students at UCLA when he was a student there in the 1980s. He made $500 a month for making three donations a week. “It was work you could do that wasn’t painful,” he said. When he tried later to learn how many children he had fathered as a result of his donations, he kept getting different answers, ranging from one to 10 children. He said the bank never contacted him to ask him for a medical update.

Lisa Swanson, a lawyer, learned at age 30 that she was donor-conceived. When she tried to learn about her biological father, she ran into a dead-end with the clinic that arranged her conception.

“They told me all the records had been destroyed,” she said. “They also said they had no idea how to reach the doctor.”

“I know nothing about half of my genetic health information,” she said. More should be required of the industry, she said. Physicians “are creating human beings but destroying our ability to know where we came from.”

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .

This story comes from our partner , the daily news service of the Pew Charitable Trusts.

Sequestration spares Medicaid and almost all of Medicare, but automatic cuts to other federal health care programs will make it more difficult for low-income Americans to get maternal and infant care, vaccinate their children, and receive treatment for mental illness.

The federal government gives states tens of millions of dollars in grant money for health services each year, and all of those programs are subject to sequestration cuts.

In addition, Washington will be funneling less public health and research money to states because of automatic cuts to federal agencies such as the Centers for Disease Control and the National Institutes of Health.

Overall,Ìý is designed to cut about $85 billion from federal spending in the remainder of the federal fiscal year, which ends in October. About half of that total will come from a 5 percent across-the-board cut in discretionary domestic spending, which will affectÌý federal grants, safety-net programs and research initiatives. The other half will come from an 8 percent cut in defense spending.

It’s still unclear how much federal health-care money each state would lose as a result of the sequester. But critics say it won’t be long before people start feeling the impact.

“I don’t know what the smartest approach would have been to deficit reduction,” says Michael Fraser, CEO of the Association of Maternal and Child Health Programs, “but it’s not this.”

One agency bracing for the cuts is the Health Resources and Service Administration (HRSA), which pays for many maternal and children’s health programs. In 2011, HRSA disbursed $7 billion to the states, with a high of $827 million going to California and a low of $20 million to Vermont, according to the Trust for America’s Health, a nonpartisan group that advocates for public health improvements.

Sequestration will cut $365 million from HRSA’s budget. According to Fraser, that money would have been spent on screening newborns for genetic conditions; immunizing uninsured and underinsured children; and tobacco cessation programs for pregnant women, among other things.

The HRSA cuts will also reduce the funding to 7,000 community health centers. The centers, which are located in every state and every territory, provide health care to people living in communities that are poor or geographically isolated.

States also rely heavily on Mental Health Block Grants, which the federal government distributes through the Substance Abuse and Mental Health Services Administration. That agency is losing $168 million in the sequester. Those grants finance a variety of community-based mental health and addiction programs. According to Federal Funds Information for States (FFIS), in 2012, California received the most in federal mental health block grants at $57.4 million, while Wyoming received $491,000, less than any other state.

“What we’re afraid of is that the cuts to mental health block grants could result in 373,000 adults with serious mental health issues and children with serious behavioral and emotional illness not receiving the mental health services they need,” says Joel Miller, of the National Association of State Mental Health Program Directors.

Nationally, the Obama Administration claims that as a result of the sequester more than 373,000 mentally ill adults and seriously emotionally disturbed children will lose mental health services. In addition, the administration says, roughly 8,900 homeless people with serious mental illnesses will not receive care; 109,000 addicts will be denied in-patient treatment; and an additional 91,000 addicts won’t receive out-patient care.

“This will lead to increased hospitalizations, more involvement of the criminal and juvenile justice systems and increased homelessness,” Miller predicts.

The cuts to Mental Health Block Grants come at the end of a four-year period in which states have reduced their overall investment in mental health services by $4.35 billion. They also come at a time when a spate of mass shootings, such as the killings in Newtown, Connecticut and Aurora, Colorado, has focused attention on deficiencies in mental health services in the country.

Sequestration also will cut $303 million from the Centers for Disease Control and Prevention. States rely heavily on CDC money, which comprises about 40 percent of their public health budgets. In 2011, the CDC disbursed $6.3 billion to the states, ranging from $18 million to Wyoming to $796 million to California.

Local and state public health departments already have laid off hundreds of public health workers as a result of the recession. Georges Benjamin, executive director of the American Public Health Association, says these new cuts to the CDC will make it more difficult to detect and stave off new infectious diseases while reducing the ability to screen for known diseases, such as HIV/AIDS.

Although medical research money is not generally filtered through the states, the National Institutes of Health’s sequestration cut of $1.5 billion will be felt in research institutions in every corner of the country. In addition to slowing or stopping some medical research, those sequester cuts are likely to mean job losses at many of those institutions.

States do not have responsibility for Indian reservations, but that is another place where the sequestration will affect health care. The automatic cuts will reduce funding for the Indian Health Service by $198 million, a reduction which could decrease in-patient admissions by 3,000 and outpatient visits by as much as 804,000 in tribal hospitals and clinics, according to the Obama administration.

This article first appeared on Ñî¹óåú´«Ã½Ò•îl Health News and is republished here under a .