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Protecting your children's privacy: The Facts
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Item(s) found: 8
Genetic Testing and Screening in the Age of Genomic Medicine
Date CapturedThursday October 18 2012, 8:38 AM
Most states, including New York, have added tests to their newborn screening panels without formal criteria or processes to guide them. Many commentators recommend that newborn screening programs form advisory committees composed of medical and laboratory professionals and community participants to establish criteria for screening tests and to review screening test panels and program outcomes.
ELSI Panel Addresses Genomics Consent and Privacy at CSHL
Date CapturedFriday May 08 2009, 7:06 PM
GenomeWeb Daily News -- Andrea Anderson-- [For instance, some have expressed concern that even de-identified genetic data could be linked to study participants. Last August, the National Institutes of Health pulled their GWAS data from public databases in response to research suggesting that it might be possible to identify an individual from pooled genetic data. There has also been a great deal of discussion about what information participants should get back from such studies as well as researchers' responsibility for informing subjects about incidental findings. ]
F.B.I. and States Vastly Expand DNA Databases
Date CapturedSunday April 19 2009, 5:40 PM
NY Times By SOLOMON MOORE -- Published: April 18, 2009 -- [Minors are required to provide DNA samples in 35 states upon conviction, and in some states upon arrest. Three juvenile suspects in November filed the only current constitutional challenge against taking DNA at the time of arrest. The judge temporarily stopped DNA collection from the three youths, and the case is continuing. Sixteen states now take DNA from some who have been found guilty of misdemeanors. As more police agencies take DNA for a greater variety of lesser and suspected crimes, civil rights advocates say the government’s power is becoming too broadly applied. “What we object to — and what the Constitution prohibits — is the indiscriminate taking of DNA for things like writing an insufficient funds check, shoplifting, drug convictions,” said Michael Risher, a lawyer for the American Civil Liberties Union.]
What Every American Needs to Know about the HIPAA Medical Privacy Rule* -- Updated November 2008
Date CapturedSunday January 18 2009, 9:39 PM
By Sue A. Blevins, president of the Institute for Health Freedom and Robin Kaigh, Esq., an attorney dedicated to patients’ health privacy rights. [Did you know that under the federal HIPPA (Health Insurance Portability and Accountability Act of 1996) medical privacy rule, your personal health information—including past records and genetic information—can be disclosed without your consent to large organizations such as the following? Data-processing companies; Insurers; Researchers (in some instances); Hospitals; Doctors (even those not treating you); Law enforcement officials; Public health officials; Federal government.
Genetic Privacy - Individual's Genetic Information - Personal Property Rights
Date CapturedMonday January 12 2009, 8:32 PM
HOUSE BILL 12 -- File Code: Criminal Law - Substantive Crimes Crossfiled with: SENATE BILL 54 - Prohibiting a person from knowingly collecting, analyzing, or retaining a DNA sample from an individual, performing a DNA analysis, or retaining or disclosing the results of a DNA analysis without written informed consent; exempting the collection and analysis of DNA samples for specified purposes from the prohibition; providing that the DNA sample and the results of the DNA analysis are the exclusive property of the individual from whom the sample is collected; etc.
U.S. set to expand DNA collections
Date CapturedMonday December 22 2008, 4:06 PM
Washington Times Tom Ramstack writes [The government is expanding collection of DNA samples beginning Jan. 9 to include anyone arrested on federal charges and many immigrants detained by the Homeland Security Department. Previously, DNA was collected only from people convicted of crimes. Civil rights advocates are up in arms. They say DNA sampling before conviction is another example of big government trampling the privacy of individuals.]
Minnesota Department of Health Continues to Violate State Law and Individual Privacy
Date CapturedSaturday December 13 2008, 4:29 PM
St. Paul/Minneapolis – Concerned parents and the Citizens’ Council on Health Care (CCHC) called on Governor Tim Pawlenty to require his Commissioner of Health to cease and desist the warehousing of newborn blood and baby DNA without informed, written parent consent.

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