Hospitals Accused of Creating DNA Database by Blood Samples of Newborns without Parent’s Permission

This is happening in America as well:

Hospitals Accused of Creating DNA Database by Blood Samples of Newborns without

It has recently been revealed that hospitals store the DNAs of millions of newborn babies without even taking permission for the parents.

The DNA collection is done by using blood samples that are taken by heel-prick tests in order to screen serious conditions like sickle cell and cystic fibrosis.

And further the DNA is used by the Police in investigation that can further help in identifying people who are suspected to be involved in crimes. The samples can also be used for various research purposes and to create the national DNA database.

It is legal according to the Government guidelines, for the hospitals to store the DNA samples for five years but it has been reported by the families that they are not informed for how long the samples are retained and that it is not even revealed that the samples will be used by Police.

It is also illegal to use individual samples without a court order.

According to the Shami Chakrabarti, Director of the Civil Rights Pressure Group Liberty, the group demanding investigation, stated that merely providing a leaflet to mother does not “create informed consent” and that this can land the hospital authorities into a number of charges of disobeying Human Rights Act.

It has also been reported that some hospitals including Central Manchester University Hospital’s Trust store the samples unlawfully for indefinite period.

All this information was collected through a series of Freedom of Information requests. Following this, Andrew Lansley, Secretary of State for Health, has directed to enquire the mater.

Here is information about what is happening in America:

The lawyers at Proskauer Rose recently posted an article on this topic on the firm’s excellent privacy law blog.

Parents in Minnesota and Texas recently discovered that these states have been storing their babies’ blood spots and making those samples available to scientists for medical research without obtaining the their permission.  The parents are challenging this practice, bringing attention to the issue at a time when there is increasing interest in using the collected blood spots to study diseases.  The National Institutes of Health, for example, is funding a $13.5 million, five-year project aimed at creating a “virtual repository” of blood samples from around the country.

This is not a little tiny thing affecting just a few people in fancy hospitals. According to the Washington Post, Minnesota has 800,000 blood spots on file; Texas has over 4 million; and Michigan has over 3.5 million, just to name a few states.

Stockpiling millions of blood samples without consent is a highly questionable practice. Dr. Dudes, can’t you just test the blood for genetic disorders and then, if consent hasn’t been given for archiving it, throw it out?


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