News from Rep. Paul Thissen - Newborn Screening

News from Rep. Paul Thissen - Newborn Screening

Rep. Paul Thissen

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Newborn Screening	[Apr. 20th, 2008\|10:58 pm]
This week, the House had a significant debate -- a deliberative debate in the truest sense of the word -- on my bill to amend Minnesota's newborn screening law . The bill imposes stronger requirements that Minnesota parents be given complete information about newborn screening than under the current newborn screening law. Minnesota has had an extremely successful newborn screening program. In January, the state won a national award for its program. The state currently screens for over 50 heritable conditions. These conditions generally have four things in common: 1. The conditions are genetic. Most often, however, the parents do not know that they carry the particular genetic condition. 2. The condition is not apparent at birth. 3. The condition is dangerous. It can result in serious disability or death. 4. The condition is treatable if detected early. Minnesota has had a newborn screening program since the 1960s. In 2003, the legislature enacted new standards governing disclosure and consent. The provisions are found in Minn Stat 144.125, subd. 3. In 2006, the legislature passed a general law governing genetic information and thereafter, an administrative law judge ruled that the 2006 law took precedence over the 2003 law. HF 3438/SF 3138 is intended to clarify that the legislature's specific protocol for newborn screening in fact should govern. In addition, the legislation will add protections for families. Under the law when passed, families must be given a document informing them that blood samples may be retained by the Department of Health (federal law requires that the samples be kept for 24 months); the benefits and detriments of testing; the ways the samples will be stored and used in the future; and the right of the parents to opt-out of (1) the testing altogether or (2) use of the blood samples for disaggregated public health studies or research. In addition, the family may also request that the blood samples be destroyed after 24 months. The heart of the debate is whether, instead of an opt-out provision, the state should require an opt-in with written consent. I have resisted that approach for two reasons. First, more families will choose not to get the test and, as a result, more children will die or face disability needelessly. Second, an opt-in or written consent requirement will interfere with important efforts to conduct quality assurance on current newborn screening tests and to develop new tests. In addition, it will detract from the reliability and validity of public health research using the blood samples. Notably, the research is conducted under the guidance of the Institutional Review Board. The debate raised important and significant questions about genetic privacy. (There are those in the blogosphere who are badly misrepresenting the issues which is unfortunate.) In the end, however, we cannot allow the discussion to devolve into a false choice between parent's rights against public interest (and thanks to Rep. Winkler for identifying the child's rights as well). The reality is that the legislature and society in general attempt to strike a balance between or among competing rights all the time. Here, the interest in preventing and avoiding terrible childhood diseases and death must be weighed against the right to make an informed choice. In this case, the law will require that parents be given substantial information and significant rights to opt-out and have samples destroyed. I believe that the bill strikes the right balance.
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