On June 20th, the Petrie-Flom Center welcomed Susannah Baruch on board as its new Executive Director.
Susannah comes to the Petrie-Flom Center with expertise in reproductive health law policy, genetics, and genomics, and a wealth of experience in nonprofits, academia, and government. We asked Susannah to share a bit about herself and her past work by way of introduction to Bill of Health’s readers.
The following interview has been edited and condensed.
By Sharona Hoffman
As the American population ages, employers must contend with the growing challenge of cognitive decline in the workplace.
Cognitive decline becomes more common as individuals age. The risk of Alzheimer’s disease doubles every five years after age 65, and almost one-third of people over 85 have the disease. And, as detailed in my book, Aging with a Plan: How a Little Thought Today Can Vastly Improve Your Tomorrow, the American population is aging. By 2034, about 77 million people will be seniors, accounting for 21% of U.S. residents.
Additionally, many professionals work past retirement age. For example, over 31% of physicians are over 60, and 15% of attorneys are over 65. The average age of federal judges is 69.
Considered together, these trends substantiate concerns about the increasing prevalence of cognitive decline in the workplace. Recent research provides further support: when Yale New Haven Hospital tested clinicians on staff who were seventy and older, it found that almost 13% had significant cognitive deficits.
Older employees often bring a wealth of experience and highly refined skills to their jobs. They can therefore add great strength to the workforce. Yet, employees with cognitive decline can cause a multitude of complex challenges in the workplace. They can threaten workplace productivity, workforce morale, and even public safety.
How might employers address cognitive decline concerns? As I argue in my article “Cognitive Decline and the Workplace” (forthcoming in the Wake Forest Law Review), there are several options, but many are legally and ethically problematic.
By Robert I. Field, Anthony W. Orlando, and Arnold J. Rosoff
Large genetic databases pose well-known privacy risks. Unauthorized disclosure of an individual’s data can lead to discrimination, public embarrassment, and unwanted revelation of family secrets. Data leaks are of increasing concern as technology for reidentifying anonymous genomes continues to advance.
Yet, with the exception of California and Virginia, state legislative attempts to protect data privacy, most recently in Florida, Oklahoma, and Wisconsin, have failed to garner widespread support. Political resistance is particularly stiff with respect to a private right of action. Therefore, we propose a federal regulatory approach, which we describe below.
By Anna C F Lewis and Anya E R Prince
On July 1, a law banning the use of genetic information by life, long-term care, and disability income insurers took effect in Florida.
Florida’s success marks a potential turning point of bipartisan appeal for this issue.
The passage of this law, which we explore in a recent article published in Genetics in Medicine, the official journal of the American College of Medical Genetics and Genomics (ACMG), was propelled by a campaign that argued that an individual’s DNA should not be weaponized against them, that affordable insurance shouldn’t just be for the genetic elite, and that an individual should be able to keep their genetic data private.
By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society
In a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non- discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.
We’ve covered the history of genetic non-discrimination legislation and the potential risks of being discriminated against in housing and lending and education based on genetic data. Those risks are clear: there are many reasons why a bank, landlord, or school might want to take a person’s genetic information (and, thus, their potential future health) into account. Let’s take a deeper dive into two broad arguments in favor of strong privacy protections for genetic information and their consequences.
A common policy argument in favor of genetic non-discrimination legislation is that genetic discrimination is unjust because the outcomes implicated by one’s genes may never manifest. In 2001, President George W. Bush stated that “[g]enetic discrimination is unfair to workers and their families. It is unjustified – among other reasons, because it involves little more than medical speculation. A genetic predisposition toward cancer or heart disease does not mean the condition will develop.” Read More
By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society
In a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.
Most states regulate the use of genetic information in some way, but protections are typically limited to employment and insurance. To most people, those two areas of protection seem obvious: it’s easy to see why your health insurer would want to know if you’re likely to become expensive to cover. Likewise, you can also understand why potential employers would want to know if they’re about to hire a worker who’s likely to need significant time off to attend to health issues. Only a select number of states ban genetic information discrimination in other contexts, like education, disability insurance, and life insurance.
By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society
In a new, year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non-discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large.
As discussed in our last post, most states regulate the use of genetic information in some way, although usually only in employment and insurance. Comparatively few states have protections against genetic discrimination in other contexts. Today, we’re exploring education protections in eight states: California, Illinois, Massachusetts, Michigan, Utah, Virginia, Washington, and West Virginia.
In comparison with other genetic non-discrimination protections, most states have not acted to implement protections in the education context. California, West Virginia, and Washington are the only states out of the eight surveyed with these types of protections.
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