Without safeguards, the privacy of the family of the deceased is at risk.
By Michael White
You can learn things from the DNA of a close relative that you might want to keep private. A genetic test could reveal a familial risk for breast cancer or cystic fibrosis, or perhaps an instance of what is euphemistically called “misattributed paternity.” Or you might learn something you’d rather not know––maybe you have an elevated risk for a fatal, incurable disease like Huntington’s. Information like this clearly affects not just the person who takes a genetic test, but that person’s family as well.
This is especially true when it comes to genetic testing the dead, who no longer have privacy concerns––but whose families do. Genetic testing is becoming a more routine part of the autopsies conducted by medical examiners, and this means there is a new opportunity for a family’s genetic privacy to be violated. One especially disturbing possibility is the breach of a family’s genetic privacy at a time when they are most vulnerable — after the sudden, unexpected death of a child.
A child’s death can put a family’s genetic privacy at risk because medical examiners are now turning to DNA testing, or “molecular autopsies,” to close cases where otherwise healthy children die unexpectedly. In all states, medical examiners are required by law to investigate not just suspected homicides and accidental deaths, but also any sudden death that is unexpected.
Among the most unexpected, non-accidental deaths are those of apparently healthy children and young adults who suddenly die for no obvious reason. Such deaths are relatively rare, and are usually caused by an undetected medical condition. Most notorious among these deaths is sudden infant death syndrome (SIDS), but SIDS is only one condition in a broader phenomenon of unexpected death among the young. Often caused by an undiagnosed heart condition, what’s known as “sudden death of the young” affects several thousand young people every year. Because these deaths are rare, we usually hear about them only when a promising athlete is involved, like Wes Leonard, the 16-year-old basketball player who collapsed on the court of his Michigan high school after scoring the game-winning shot.
“Many people consider genetic information to be just as private as graphic images, justifying similar protections.”
These sudden, tragic deaths usually fall within the medical examiner’s legal purview. And because there are often no obvious signs of pathology detected in a standard autopsy, medical examiners turn to newly available, inexpensive DNA testing to close these cases. DNA tests can, in some instances, reveal a harmful mutation that likely caused the child’s death. The National Association of Medical Examiners now recommends that samples for genetic testing be saved “from individuals 40 years of age and younger who die suddenly and unexpectedly and whose deaths remain unexplained at the completion of the autopsy.”
This is where the requirements of the law collide with the ethical right of a family to keep their genetic information private. In medical care and scientific research, there are extensive, if imperfect, safeguards in place to ensure that people’s genetic data is kept confidential and not used without their consent. But a medical examiner is a public official performing a public investigation, and doesn’t need a family’s consent to do whatever necessary to resolve the case. And, as part of a public investigation, autopsy results are subject to public-disclosure laws. This means that, when a family loses a child to SIDS or some other condition that causes sudden death, their private genetic information can, perfectly legally, become public.
This is new territory for the justice system, which is already doing a poor job of maintaining basic ethical standards for genetic privacy when the police collect DNA from suspects. To provide guidance for medical examiners, the Molecular Autopsy Consortium of Houston (MATCH), a collaboration between the Harris County medical examiner’s office and Baylor University, has been exploring the ethical pitfalls and policy issues that will confront medical examiners as they incorporate genetic testing into their work.
In a recently published study, the MATCH team laid out a set of ethical recommendations for how medical examiners should proceed when conducting a DNA analysis as part of an autopsy. These recommendations attempt to fuse medical examiners’ legal obligations with the standards for genetic privacy used in medical practice — that someone’s genetic data must be kept confidential and not used without their consent.
When it comes to consent, a family shouldn’t be allowed “to veto an aspect of the death investigation [that] would be at odds with both professional responsibility and the legal duty of a public official.” But if medical examiners make an effort to inform the family that they are conducting a genetic test, the MATCH team argues that this will not only increase the family’s trust in the investigation, but it will likely make them more willing to cooperate, such as by providing DNA samples from other family members for a more conclusive genetic analysis.
More important is confidentiality. While autopsy reports are public records, certain aspects of autopsies, such as gruesome photographs, have long been legally protected from public disclosure requirements. The MATCH team argues that genetic data should received the same legal protection: “Many people consider genetic information to be just as private as graphic images, justifying similar protections.”
This work is a small step forward toward establishing professional standards and legal safeguards for genetic information that passes through the medical examiner’s office. From the earliest days of the Human Genome Project, the scientific and medical communities have worked to establish a legal and ethical framework to govern the privacy of genetic information. However, as genetic testing technologies have spread, these ethical principles have not always traveled with them. If the justice system is going to use genetic testing, it needs to adopt not just the technology, but also the high ethical standards that come with it.