Genetics' impact on adoption records Health: Advances in gene research strengthen the case for adoptees who want to know their birth parents' medical history.

July 23, 1996|By Marie McCullough | Marie McCullough,KNIGHT-RIDDER NEWS SERVICE

Deb Schwarz assumed that she was entitled to know her parents' medical histories, even though, under Pennsylvania law, she knew she couldn't get their names.

Like many adoptees, she was naive.

It took months for the agency that handled her adoption 36 years ago to dig her file out of the archives -- and only seconds for her to see that the information was worthless.

"Both your parents," the agency divulged, "were in their mid-20s and were considered American."

But what really outraged Schwarz, and turned the San Francisco marketing research consultant into a national crusader for open adoption records, was what she discovered after a private investigator located her mother in a Harrisburg nursing home.

Her mother is dying of breast cancer, a disease that Schwarz has learned is so prevalent in her family tree that she has decided to be tested for the breast-cancer gene.

"Adult adoptees deserve their medical information and heritage. We should not have to grovel, pay excessive amounts of money or go underground to get it," Schwarz declared in a recent letter to Pennsylvania legislators.

The revolution in medical genetics is having a profound effect on adoption. Adoptees, birth parents and adoptive parents alike are recognizing that adoptees need to know their risk for heart disease, cancer, depression and other genetic problems so that they can take steps to stay healthy.

Under pressure from adoption reform advocates, many adoption agencies have begun to collect detailed medical, psychological and social histories from birth parents on everything from migraines to musical aptitudes. Some states also require that birth parents be given forms so they can voluntarily update their medical histories while remaining anonymous.

In Maryland, adoptees can seek a court order to gain access to their medical records -- as long as the records do not reveal the identity of birth parents. But many adoptees resent having to go to such lengths to learn what may lurk in their genes.

"There was a time when an adoptee could say, 'I'm happy in my life and I have no need to look beyond that,' " says Nancy Newman, a Bryn Mawr lawyer who founded the Pennsylvania Adoption Legislation Coalition. "But now, because of what we know about hereditary disease, no matter how emotionally secure a person is with being adopted, there's still a question -- and it could be a life-threatening one."

Hereditary disorder

Daniel Wauters, 27, of Quincy, Calif., sometimes wondered whether he would live long enough to trace the roots of his cancer. A hereditary disorder called von Hippel-Lindau disease, it causes tumors on the eyes, kidneys, brain, spinal cord and other organs.

He and his adoptive mother, Joy Kerkhoff, waged an 11-year battle, which climaxed in court, to see his original birth certificate with his birth parents' names. During that time, Wauters went blind in one eye and endured many surgeries.

In September, he was finally reunited with his blood relatives. He learned that his mother had died of the disease and that his family had been struggling with it for generations. But he also gained hope. "When I was diagnosed, I was made to believe it was more terminal and rare than it is," Wauters said. "But my uncle is in his 60s. If I just monitor everything, I can live that long."

Opponents of open records -- the Catholic Church, many bar associations and an adoption-agency lobbying organization called the National Council on Adoption -- argue that birth parents were promised confidentiality.

Only three states -- Alaska, Kansas and Hawaii -- allow adoptees, when they turn 18, to see their original birth certificates. Twenty-three others, including Maryland, allow adoptees to try to reach birth parents through an intermediary -- an adoption agency, a state agency or a court.

On the Internet

Internet adoption mailing lists buzz with stories of adoptees who believe they are being denied vital genetic information. Schwarz, who began worrying about her genetic heritage when she and her husband decided to have a child, has collected examples:

"I was shocked to hear my medical background when my birth mother found me," a woman wrote. "My birth father had colon cancer when he was 40. I have always had bowel problems but never thought of cancer. Now I am checked yearly for signs. I also have had problems with my sugar levels. Found out my birth mother is a juvenile diabetic. She told the agency, but they never told my adoptive parents."

A woman who hasn't found her birth mother and is afraid of uterine cancer wrote, "My gynecologist believes she may have used the hormone DES because he has been concerned about abnormal cells."

A 25-year-old whose chronic depression went undiagnosed for years recently learned that her birth mother had committed suicide and that many relatives suffer from depression. "I always blamed [my adoptive family] for everything. If we had the medical information, we would have known what to do sooner," she wrote.

Giving adoptees access to records is no guarantee that they will find their parents, as Penny McGill knows.

McGill, 33, obtained her original birth certificate because she lives in Kansas, an open-records state. But after 15 years, she has found only her father.

McGill wants to know the roots of the rare congenital defect that caused both her sons to be born without soft spots on their skulls. The problem was surgically corrected in both boys, but her older son suffered brain damage before the condition was diagnosed.

McGill favors creating repositories for genetic and medical information that adoptees could get access to.

"For many of us, that's all we need," she said.

Pub Date: 7/23/96

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