Vail Daily column: Meet GINA
In my first life, I was a scientist of sorts. My first bachelor’s degree was in biology with an emphasis in genetics, and I spent five years in graduate school studying, primarily, genetics and human physiology. My work included half a decade in assorted biology labs. As I have been a lawyer now for 30 years, my prior incarnation was, obviously, some time ago (yes, before cell phones and the Internet!) and the scientific world unquestionably has changed.
Since those days, the human genome has been mapped and a blueprint, so to speak, of our collective genetic endowment has been drawn. We are complex but increasingly understandable biological machines. What’s more, it is increasingly understood that some (if, ultimately, not most) maladies from which we suffer may be traced — at least in part — to when our genetic coding goes a little haywire. To be sure, some of us come out of the hatch with transposed or missing letters in our genetic alphabet. And there is growing evidence to suggest that certain environmental factors can mess with our genetic spelling bee and transform an otherwise benign deoxyribonucleic acid sequence into the equivalent of an all-night rager. Despite my misplaced irreverence, the result can, at times, have devastating consequences.
The APOE e2 gene, for example, appears to increase your risk of Alzheimer’s. More well known, perhaps, is malfunctioning BRCA1 and BRCA2 genes association with certain types of cancer. In this brave new world of gene sequencing and genetic testing, there are genes which have been associated with maladies as diverse as autism, schizophrenia and one’s propensity to suffer ACL tears.
Mostly, I suppose, this march of scientific knowledge is a good thing, particularly if it can spare unnecessary suffering and extend our useful lives.
But there is yin to every yang, and while arming docs and researchers with the tools to save and improve lives is undoubtedly a good thing, lurking in the corner may be an evil twin. What if, for example, an insurance company wouldn’t insure you because imprinted in your genetic code is a gene pair which makes your risk for diabetes greater than the average bear? What if the next Herschel Walker may be genetically prone to collagen disease? What if you may — just may — be at higher risk for heart disease or stroke or dementia than a competitor seeking the same job?
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Simply put, what checks and balances exist to prevent the heroic march of genetic progress from being turned against you?
Well, meet GINA.
The Genetic Information Nondiscrimination Act is one of the progeny of the George W. Bush administration. Signed into law in 2008, the law is meant to save us from our evil selves. The act is intended to protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. Oddly, in this era of partisanship and bickering, the bill passed the Senate unanimously and the House by a vote of 414 to 1 (yep, Ron Paul was the lone dissenter; something about state’s rights as I understand it). That said, however, the measure awaited passage for 13 years while it was debated and languished in Congress. The bill’s intent is to pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination. The act became law effective November 2009.
Title I of GINA addresses the issue of genetic information in health insurance. Responsibility for issuing regulations related thereto lies with the Departments of Labor, Health and Human Services and the Treasury.
Title II of GINA prohibits the use of genetic information in making employment decisions, restricts employers and other entities covered by Title II (employment agencies, labor organizations and joint labor-management training and apprenticeship programs — referred to as “covered entities”) from requesting, requiring or purchasing genetic information and strictly limits the disclosure of genetic information. Title II is enforced by the Equal Employment Opportunity Commission.
The law forbids discrimination on the basis of genetic information when it comes to any aspect of employment, including hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits or any other term or condition of employment. Simply, an employer may never use genetic information to make an employment decision.
Under GINA, it is also illegal to harass a person because of his genetic information. Harassment may include making offensive or derogatory remarks about an applicant or employee’s genetic information, or about the genetic information of a relative of the applicant or employee.
It is also illegal under the act to fire, demote, harass or otherwise “retaliate” against an applicant or employee for filing a charge of discrimination, participating in a discrimination proceeding or otherwise opposing discrimination.
It is also unlawful for a “covered entity” to disclose genetic information about an applicant, employee or member.
GINA is meant to protect us from ourselves and to spare us from the law of unintended consequences. Yeah, yeah, Big Brother and all. But maybe we need a little brothering to keep the genie snugged securely in his lamp.
Rohn K. Robbins is an attorney licensed before the bars of Colorado and California who practices in the Vail Valley with the law firm of Stevens, Littman, Biddision, Tharp and Weinberg LLC. His practice areas include business and commercial transactions, real estate and development, family law, custody, divorce and civil litigation. He may be heard on Wednesdays at 7 p.m. on KZYR radio (97.7 FM) and seen on ECOTV 18 as host of “Community Focus.” Robbins may be reached at 970-926-4461 or at either of his email addresses, firstname.lastname@example.org or email@example.com.