Imagine this scenario: You just had a baby. You might be a tad tired; in a bit of a stupor, perhaps. A hospital employee —maybe your doctor or nurse — hands you a 32-page pamphlet explaining what will be done with your baby's DNA sample after it's tested for disease. You accept the pamphlet.
What have you just done? If you're in the U.K., according to the , you've just agreed to allow the British government to hold onto your baby's DNA sample indefinitely — and possibly use it for future forensic testing, genetic research and other unknown purposes.
So what does this have to do with you?
The issue of storing baby DNA after an initial screening for disease — without parents' consent — is a problem on our shores, too. The DNA of virtually every newborn in the United States is collected, usually via a blood sample taken from a prick to the baby's heel, and tested for certain genetic and other disorders. Many states view this newborn screening as so important, they don't require medical personnel to get parents’ express permission before carrying it out. And in the happy afterglow following the birth of a child, few parents think to ask what happens to the blood sample after it's screened.
As you might imagine, DNA samples are valuable to different parties for different reasons. So it's now common for states to hold onto the blood samples for years, even permanently. Some states also use the samples for unrelated purposes, such as in scientific research, and give access to the samples — or even the samples themselves — to others.
But without informed consent — that is, telling parents how long the sample will be stored and if and how their baby's blood samples will be used in the future, and then the parents agreeing — abuses will inevitably follow.
In February, the brought by parents of babies whose DNA was stored indefinitely for undisclosed future research. The suit charged the storage and future research was a violation of the Fourth Amendment rights against unlawful search and seizure. Under the settlement, approximately 5.3 million DNA samples were destroyed.
And it was just last month that the Havasupai Indian tribe in Arizona settled an ongoing lawsuit against Arizona State University over misuse of DNA samples. The university had initially taken blood samples to research the prevalence of diabetes among Havasupai tribe members, but then they were used to research , . As you might imagine, this infuriated tribe members, who said that this is not what they donated the blood samples for. The tribe was awarded a $700,000 settlement, and their blood samples were returned.
Law enforcement also has an interest in DNA. We've blogged before about the FBI's ever-growing , a DNA database with more than 8 million offender profiles. Now, known criminals and newborn babies seem worlds apart, :
In 2003, Sweden's Foreign Minister, Anna Lindh, was fatally stabbed in a department store. Police investigators did not find a match between the DNA left behind by the assassin and the national criminal database. So they turned to another DNA database, the PKU biobank, which has collected blood samples of all newborns in Sweden since 1975 as a medical resource. The police arrested a man who had been identified by the newborn screening DNA bank.
Earlier this month, the ACLU submitted comments to the Advisory Committee on Heritable Disorders in Newborns and Children, which issued a set of draft recommendations to the Department of Health and Human Services on national guidelines on the retention and use of baby DNA.
As science (and ) finds more and more uses for DNA, it's crucial that everyone, not just parents, keep an eye on their genetic material and know how it can be used (and potentially abused.) This is an issue the ACLU is monitoring very closely, so stay tuned.
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Press ReleaseDec 2024
Prisoners' Rights
Criminal Law Reform
ACLU Sues Bureau of Prisons for Keeping People in Prison Longer Than the Law AllowsACLU Sues Bureau of Prisons for Keeping People in Prison Longer Than the Law Allows
WASHINGTON – A federal lawsuit brought today by the American Civil Liberties Union, ACLU of D.C., and Jenner & Block LLP challenges the Federal Bureau of Prisons (BOP) for unlawfully incarcerating people longer than the law allows under the First Step Act. The lawsuit contends that the BOP’s failure to implement the First Step Act according to its plain language violates the rights of thousands of people who should be returning to their communities and rebuilding their lives but instead remain incarcerated. Signed into law in 2018 by then-President Donald Trump, the bipartisan First Step Act was designed to reduce the population in federal prisons, reform extreme sentencing laws, and provide programming and reentry transition services to people in prison. Central to the First Step Act is a system of earned time credits, which allows people in prison to earn time off their sentences and time out of prison by participating in rehabilitation programs. Through the First Step Act, Congress unambiguously ordered BOP to move people out of prison when they meet certain requirements to use their earned time credits. Instead of faithfully following the mandatory law, BOP adopted a regulation treating the law as optional. As a result, thousands of people, who should already be back in their communities and with their families, remain in prison. “Every extra unlawful day our clients spend in prison is a serious injustice,” said Emma Andersson, deputy director of the Criminal Law Reform Project at the ACLU. “It is egregious that the Bureau of Prisons is imprisoning people for months longer than the law allows. The government must follow through on its legal obligation to get people out of prison on time and back into their communities, where they belong.” Additional comments below from: Vanessa Crowe, plaintiff: “Time is what I owed for my wrongdoing, and I have paid my time. But I should not have to spend more time in prison than the law allows. I often reflect on what I will miss during the months after when I should be out of prison. I will miss work and lose out on wages that would help me get back on my feet. I could be a tax paying citizen instead of a burden on society. But most of all, I will miss more precious time with my family. My family and I are ready to tum the page on this period in our lives — we are all ready to start a new life, a life with purpose, hope, and healing together. I want to start that life when I am legally entitled to start it-not five months later.” Arthur Spitzer, senior counsel at ACLU of D.C.: “There’s no excuse for the Bureau of Prisons to pretend not to understand Congress’s clear command that people who have earned the right to early release must be released. This law has been on the books for six years. The Bureau of Prisons has had plenty of time to understand it. Law enforcers should obey the law.” Betsy Henthorne, partner at Jenner & Block: “It has been six years since the First Step Act was signed, but despite Congress’s clear directives, the Bureau of Prisons continues to hold thousands of people in prison longer than the law allows. We should and do expect better—it’s past time for the BOP to ensure that those who have earned their release are able to return home to their families and communities according to the law Congress passed.” -
Maryland Supreme CourtDec 2024
Criminal Law Reform
Roland Branch v. State of MarylandRoland Branch v. State of Maryland
This petition to the Supreme Court of Maryland asked the court to reconsider its adherence to Whren v. U.S., 517 U.S. 806 (1996), which declared that a traffic stop undertaken for pretextual reasons does not violate the Fourth Amendment to the U.S. Constitution so long as the police have probable cause to believe that a traffic violation occurred. The ACLU, alongside the ACLU of Maryland, filed an amicus brief in support of the defendant’s petition, in which the ACLU argued that the court should take up the question of whether pretextual stops violate the Maryland Constitution. In September 2024, the Court denied the petition. -
North Carolina Supreme CourtDec 2024
Criminal Law Reform
State v. WrightState v. Wright
This case in the North Carolina Supreme Court involves the question of whether the police violated the U.S. Constitution when they searched the defendant, Mr. Wright’s, backpack even after he repeatedly said no to the search requests. The ACLU alongside the ACLU of North Carolina filed an amicus brief arguing that the search was unconstitutional because Mr. Wright’s eventual “consent” was the result of police coercion. Our brief urges the court to consider the totality of the circumstances that make one more susceptible to coercion, including race and poverty. -
News & CommentaryDec 2024
Criminal Law Reform
Disability Rights
Incarceration Should Not be a Death Sentence for Individuals Who Use OpioidsIncarceration Should Not be a Death Sentence for Individuals Who Use Opioids
New litigation centered on increasing access to substance-use disorder treatment in jails and prisons is helping to reduce mortality rates among incarcerated individuals.