26 May 2008

DNA: More than you bargained for

The Boston Globe's story on DNA testing, "Unearthing bones can also unearth family secrets," by Alan Wirzbicki, demonstrates some ethical quandries on what testing might reveal and how to handle those revelations.

WASHINGTON - It started off as a routine DNA test to help two parents from a wealthy Southern family decide whether to have children. But the saga that unfolded as a genetic counselor investigated the family's biological roots became a tale of long-concealed secrets worthy of a Faulkner novel.

The counselor discovered that the husband, who was in his 40s, was not the biological son of the man who had raised him from birth. His real father was the man he had grown up calling uncle. The lab results posed a dilemma, the counselor recalled, forcing her to decide whether to break the news to the unsuspecting husband about the true identity of his biological father. In the end, she decided not to.

"You just can't be prepared for each and every case like this," says counselor Debbie Pencarinha.

The story goes on to discuss new technologies to help identify fallen soldiers, and how it faces the possibility that unearthed bones from far-away places could expose family secrets from World War II, such as false paternity cases.

"You could really do a lot of damage to a family," says Johnie E. Webb Jr., the deputy director of the Joint POW/MIA Accounting Command, the military unit responsible for identifying the remains of American soldiers, which has imposed a moratorium on the most powerful tests while drafting ethical guidelines. "We haven't totally come to grips with how we're going to handle it. We're going to make sure we don't do anything that's going to be embarrassing to anyone."

Ethical quandaries are emerging from increasing use of DNA tests. The tests have created dilemmas for physicians, genetics counselors and medical ethicists who are sometimes forced to reveal such cases.

Counselors and medical ethicists say that in the rapidly evolving field there are no firm guidelines for how to handle such inadvertently discovered information. In many cases, physicians simply withhold potentially traumatizing information unless disclosing it is medically necessary.

An American Association of Blood Banks official is quoted as saying that "about 25 percent of the roughly 400,000 familial DNA tests conducted every year result in an "exclusion." An Australian researcher says the number of misattributed fathers is between 1 and 3%.

The story claims that the number is believed to be higher for older generations, before abortion was legalized, and when social stigmas concerning illegitimacy and adultery forced couples to keep these events a secret.

Illegitimacy, according to the story, in the war generation may be higher for several factors. The military would uncover misattributed paternity cases in ID'ing war dead on the basis of DNA samples from their children.

Misattributed parentage is not the only secret that can be accidentally unmasked by testing. Angela Trepanier, president of the National Society for Genetic Counselors, said in one of her cases a World War II veteran who had covered up his Jewish ancestry when he joined the Army had been forced to reveal his background to his family after tests showed that his children carried a genetic disorder found in Jews.

"You sometimes get more than you bargain for," Trepanier said.

Counselors often decide to withhold such findings, but ethicists argue patients have a right to their genetic information. An article in the British medical journal Lancet said that all patients should be informed about their paternity, "no matter how embarrassing or awkward the revelation may be."

The military today has avoided the dilemma because it can't yet use the same kind of nuclear DNA used by forensic labs and genetic counselors. It was too hard to extract samples from long-buried bones and the military has relied on mtDNA (mitochondrial DNA), which is more commonly found and easier to recover. This test is used in 75-80% of missing soldier cases, helping to identify 531 missing military.

Nuclear DNA testing is on hold while the military develops a protocol for collecting samples from family and handling the results.

Read more here.

1 comment:

  1. Stephanie Weiner10:34 AM

    I have been mulling over the article "DNA: More than you bargained for." It is a part of the total "secrecy" issue, as I see it -- involving as well adoption and assisted reproduction.

    I suppose I fail to see the morality or ethicality of withholding personal
    information from an "adult" (age 18-21 up). Folks can drive a potentially lethal weapon (car), own a definitely lethal weapon (rifle/pistol etc.); an
    "adult" can marry and take on family responsibilities, and they may die in the service of their country or have to make life-or-death decisions about loved ones.

    Why, then, is it assumed that these same people cannot possibly
    cope, in an adult fashion, with family information,misinformation or disinformation about themselves, their heritage, their DNA, etc.

    Who has appointed physicians, governments, organizations, businesses, as final arbiters on whether a person should or should not have access to the most personal and private information regarding themselves?

    I find it presumptuous in the extreme for any other person to decide what information an individual may obtain about himself/herself.

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