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01/14/2019 - 3:02pm

This month, many states introduced legislation to affirmatively legalize medical aid in dying. Notable among these is New Mexico's H.B. 90.  

First, New Mexico requires no waiting period of fifteen or more days between multiple requests. There is only one 48 hour waiting period between the writing and the filling of  the prescription....

01/14/2019 - 2:29pm

By Aziza Ahmed

Genetic databases for crime control have become a national topic for debate after the arrest of the Golden State Killer, also known by his real name, Joseph James DeAngelo.

At the time of his arrest, DeAngelo was 72 years old and had committed more than 50 rapes and 12 murders. While his arrest was celebrated as a law enforcement victory, a host of questions emerged because of the way law enforcement officials eventually found DeAngelo: through a combination of traditional detective work and utilization of data from a crowd-sourced genetic database. In this case, police searched GED-Match, a website created by the Mormon church where users can share genealogical information and find “familial” DNA matches

The Golden State Killer case reignited numerous debates on the issue of DNA searches and the use of DNA evidence, but with a twist. The big question is, should investigators utilize genetic databases, whether run by the government or by private agencies and individuals, to identify the families of suspects, if doing so will lead them to the culprit?

Though the opportunities for crime-solving by utilizing DNA database searches may be vast, new technologies and innovative uses of them do not occur in a vacuum. Instead, novel uses of technology demand consideration of a vast number of ethical issues, and mandate careful interrogation of the potential impact of DNA databases on crime control.


A bit of history

DNA began to be utilized for crime control in the UK, and more broadly (including in the United States), by the 1980s. There were immediate legal challenges to the collection and use of DNA evidence, as well as attempts to utilize DNA evidence to exonerate those accused of crimes.

By 1994, authorized by the DNA Identification Act, the FBI established the Combined DNA Index System (CODIS) which collected and assisted with the analysis of DNA samples. CODIS allows local, state, and national searches of the DNA Index system. As of 2018, there are currently 13-15 million profiles in CODIS.

CODIS regulated the use of DNA samples in the federal database by mandating that samples be processed through compliance with quality assurance standards, that they undergo an external audit, and that the laboratories submitting DNA records are accredited through a non-profit, nationally recognized association engaged in forensic science.


Issues with using DNA testing in law enforcement: Errors

It is difficult to overstate the support for DNA as it became incorporated into crime solving.  Supporters of DNA for crime control celebrated its potential for the ability to control crime in a targeted and certain way. And, while DNA testing did reveal more alleged perpetrators of crime and CODIS brought standardization to the field, the many logistical and ethical problems with DNA testing quickly became clear.

These issues include basic human error and human bias, linking innocent people to crimes, privacy rights, and a surge in racial disparities.

In 2011, in their much-cited study, researchers Itiel Dror and Greg Hampikian found that DNA interpretation varied significantly among lab technicians and forensic experts. Dror and Hampikian sent the exact same DNA mixtures to 17 different experts to ascertain whether they would arrive at the same conclusion as the original forensic analysis.

Challenging the viewpoint that “context” doesn’t matter, the 17 forensic scientists arrived at remarkably different results. Dror and Hampikian argue that this demonstrates that what the forensic scientist knows about the investigation (for example that the prosecutors are relying on the results generated to move forward) may impact the interpretation of a DNA sample.  Perhaps then, it is no surprise, that there are now numerous cases of lab techs who make mistakes or argue that there was a DNA match when there was none.

There is also a basic fear of creating a genetic dragnet, bringing families and individuals with little to no link to a crime into the investigation, and, in turn, forgoing traditional forms of investigatory work that would actually broaden the scope of a search.

As Erin Murphy, professor and author of the book “Inside the Cell: The Dark Side of Forensic DNA,” convincingly argues, it is actually the idea that DNA is more reliable than other types of forensic evidence that may perpetuate the challenges associated with it – namely, conducting investigations and assuming that there is truth in the findings, when in fact, the results of a partial or familial match could be have led investigators to the wrong sources — a common occurrence.


Privacy and racial considerations

Another concern raised by nearly every critic of familial searches, from scholars to those in government, is the numerous ways in which privacy rights are violated by familial searches. The privacy rights critique has several dimensions: concerns for those tested, for the many family members who are caught in the larger crime response dragnet, and a distinct concern for the innocents whose lives might be destroyed by being under a cloud of suspicion

Concerns for privacy are so significant that even where familial searches are being more frequently conducted, measures are often put into place to slow the process down and allow for some assessment of the benefits and harms that may come from a particular search.

In 2017, for example, the New York State division of criminal justice services loosened their policy on conducting family searches. They now allow for searches, but only under certain circumstances, and only under review. The change had the support of district attorneys, as well as the father of a murder victim who has been very public in his support of the expansion of DNA searches.

Privacy issues may even impact those who are falsely accused of crimes. Thanks to the use of social media, wrongly accused individuals may end up with deep reputational damage, or in addition to increased stress from believing they may be falsely accused of a crime.

And finally, one of the most powerful critiques of the use of databases for familial DNA searching is the disproportionate impact it would have on black and Latino individuals who are already ensnared by the criminal justice system. This argument has been carefully made by numerous legal scholars including Hank Greely, Dorothy Roberts, and Erin Murphy.

Racial disparities in imprisonment translates into the disproportionate collection of African American men having their DNA taken and stored in federal and state databases.

In their brief to the Supreme Court for Washington v King, the Council for Responsible Genetics make this argument clearly drawing on a series of statistics: In 2010, black people accounted for approximately 27 percent of adult arrests at a time when the adult black population was 12 percent. In some counties, where black people make up 52 percent of the population, such as Shelby County, Tenn., black people constitute 85 percent of felony defendants.

And in that same year, the Hispanic population of Maricopa County, Ariz. was 30 percent, while Hispanics made up 39 percent of the felony defendant population. Importantly, while many of those arrested are black and Latino, thereby populating DNA databases, many are often not convicted.

Hank Greely estimated in 2006 that 40 percent of the US federal database originated from African Americans. Other estimates suggest that 41 to 49 percent of CODIS profiles are from African Americans

The range of possible harms have been argued by many: an increased impact of DNA, surveillance on minority communities (exacerbating racial disparities), the idea of guilt by association, and disrupting family harmony as individuals get investigated — regardless of their involvement with the crime.

In Maryland v. King, the case that allowed for expanded DNA testing of arrestees, Scalia stated in his dissent, joined by Ruth Bader Ginsburg, Sonia Sotomayor, and Elena Kagan: “Perhaps the construction of such a genetic panopticon is wise. But I doubt that the proud men who wrote the charter of our liberties would have been so eager to open their mouths for royal inspection.”  While Scalia may be true, it is worth noting that, many who face “royal inspection” do not do so eagerly but instead must do so as they become part of the ever-expanding attempt to gather manage DNA data in the carceral state.


This post is part of the Seventh Annual Health Law Year in P/Review Symposium, a digital conversation reflecting on 2018’s biggest topics in health law policy and discussing the upcoming issues of 2019.

The post Ethical Concerns of DNA Databases used for Crime Control appeared first on Bill of Health.

01/14/2019 - 1:59pm

“This policy is a tiny step forward, but falls far short of what’s needed,” said Jeanne Pinder, the founder and chief executive of Clear Health Costs, a consumer health research organization. “The posted prices are fanciful, inflated, difficult to decode and inconsistent, so it’s hard to see how an average person would find them useful.”

01/14/2019 - 1:31pm

A federal judge has blocked a Trump administration rule that would greatly expand the number of employers that could decline to offer contraceptive coverage on moral or religious grounds

01/14/2019 - 1:16pm

In a recent documentary, the geneticist doubled down on comments he made a decade ago, then apologized for, regarding race, genetics and intelligence

01/14/2019 - 1:08pm

A debate over genetic sequences and national rights threatens to inhibit research

01/13/2019 - 8:45am

It looks like the European Court of Human Rights will hear Mortier v. Belgium which concerns euthanasia safeguards for psychiatric conditions.

Since 2012, the Belgian federal commission of control and evaluation (which is charged with verifying the procedure and conditions in the May 28, 2002 euthanasia law) found no infringement with the law. Similarly, neither the Brussels College of Physicians not criminal prosecutors pursued the matter....

01/13/2019 - 8:45am

It looks like the European Court of Human Rights will hear Mortier v. Belgium which concerns euthanasia safeguards for psychiatric conditions.

The patient's son (Tom Mortier) brought an application alleging that physicians euthanized his mother (Godelieva De Troyer), in 2012, without his or sister's knowledge. His mother was suffering from chronic depression.

Since 2012, the Belgian federal commission of control and evaluation (which is charged with verifying the procedure and conditions in the May 28, 2002 euthanasia law) found no infringement with the law. Similarly, neither the Brussels College of Physicians not criminal prosecutors pursued the matter.

Because no Belgian government authority would pursue the matter, the patient's son alleges that Belgium failed its positive obligations to protect the life of his mother, because the procedure provided for by the Law of 28 May 2002 was not complied with. He also alleges a violation of the procedural aspect of Article 2 of the Convention in view of the lack of a thorough and effective investigation. Among other things, the commission was not apparently not independent from the treating physician (Wim Distelmans).

The court has posed four questions to the parties to assess whether it should take the case.

1. Has the applicant exhausted domestic remedies within the meaning of Article 35 § 1 of the Convention?

2. Has the right to life of the applicant's mother as guaranteed by Article 2 of the Convention been respected? In particular, has the State complied with its preventive obligations under this provision?

3. Has an effective investigation in accordance with the requirements of Article 2 of the Convention been conducted in this case?

4. Does a separate question arise in respect of the applicant's right to respect for his private and family life as guaranteed by Article 8 of the Convention? If so, has this provision been misunderstood?

01/14/2019 - 11:04pm
Lulu & Nana, les deux premiers bébés “CRISPR-Cas9”, immunisés contre le SIDA, viennent de naître en Chine… de quoi alimenter le débat scientifique et éthique autour des thérapies géniques.
01/11/2019 - 1:57pm

Petrie-Flom Executive Director Carmel Shachar hosted a webinar with the American Medical Association Medical Student Section Committee on Economics and Quality in Medicine on the the ethics and economics of single payer health care.

Watch it now!

The post Medicare For All Webinar: Investigating an American Right to Health appeared first on Bill of Health.