Genetic Information Nondiscrimination Act
On November 9th the Equal Employment Opportunity Commission published final regulations (effective January 2011) implementing Title II of the Genetic Information Nondiscrimination Act or GINA.
Congress enacted GINA because it believed that a national and uniform basic standard is necessary to protect the public from discrimination and allay concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies. There are a patchwork of state laws that address the use of genetic information. The majority of states have laws that prohibit the use of genetic information in underwriting decisions in health insurance (remember state laws are preempted by ERISA so these laws would not apply to ERISA plans, generally employer sponsor health plans. (A chart of state laws concerning health insurance and genetic information is available at http://www.ncsl.org/default.aspx?tabid=14374) State genetic nondiscrimination laws in the employment context are in place in 34 states and Washington DC. The protections afforded vary by state (A chart with state laws concerning employment and genetic information is available here: http://www.ncsl.org/default.aspx?tabid=14280) Finally there are a few states that have passed genetic nondiscrimination laws for long-term care, life, and disability insurance. Once again these vary by state (A chart of state laws concerning life, disability, and long-term care insurance and genetic information is available here: http://www.ncsl.org/default.aspx?tabid=14283)
GINA is divided into two titles. Title I prohibits discrimination in health coverage based on genetic information. Title I applies to group health plans sponsored by private employers, unions, state and local government employers, issuers in the group and individual health insurance markets, and issuers of Medicare supplemental insurance.
Title II prohibits discrimination in employment based on genetic information and limits the acquisition of genetic information by employers, labor unions, employment agencies, and joint labor-management committees. The individuals protected by Title II of GINA are job applicants, current and former employees, labor union members, and apprentices and trainees.
The article I am working on applies GINA and its regulations to HHT. HHT is short for Hereditary Hemorrhagic Telangiectasia, a dominant hereditary disease of abnormal blood vessel formation. Some background information about HHT:
· It is nonsex-linked dominant hereditary disease (therefore, each child had a 50-50 chance of having the disease)
· It occurs in 1 in 5,000 to 8,000 people
· A person can have no symptoms and still have the disease
· The symptoms of the diseases usually worsen with age
· HHT is a multisystem disorder and can strike the skin, nose, GI tract, lungs, liver, and brain. (More information about HHT is available here: www.hht.org)
The issue with HTT and GINA is when has the disease "manifested". Once a disease has manifested it a current health condition and no longer protected by GINA (family history still is and so are the genetic test and counseling but the fact that a person has the disease is no longer protected). According to the literature, the current diagnostic criteria for determining if a patient has HHT are the Curacao Criteria (Scott E. Olitsky, MD, Hereditary Hemorrhagic Telangiectasia, 82 American Family Physician, 785, 788 (October 1, 2010)) The criteria are: (1) spontaneous, recurrent nosebleeds; (2) a first-degree relative (sibling, parent, child) with HHT; (3) multiple telangiectasias at characteristic sites (lips, mouth, nose, fingers, finger nail bed); (4) visceral lesions (gastrointestinal tealngiectasia, lung AVM, liver AVM, or brain AVM). The HHT diagnosis is made if three of the criteria are present, it is suspected if two are present, and not likely if less than two.
While I grappled with HHT and GINA, I made Brunswick Stew. There are two place that claim to be the originator of Brunswick Stew. One is Brunswick, Georgia; the other is Brunswick County, North Carolina. I have no idea which one was the first. . Brunswick stew it is a thick tomato-based stew that can have a variety of meats—pork, chicken, rabbit, and squirrel. Every Brunswick stew I have made has had corn and either lima or butter beans. Brunswick stew is like gumbo-- everyone has a different recipe and everyone thinks their recipe is the best My recipe for Brunswick Stew (like gumbo) changes based on the leftovers I have.
Here is how I made today’s version of Brunswick Stew:
Cover 4 chicken leg quarters, pulled pork (with the bone), and a couple ribs of celery with water and cook for approximately 45 minutes (until the chicken is done). *** Meanwhile- sauté 4 cloves of sliced garlic, chopped up celery, one onion diced, and chopped green peppers (I also threw in a hot pepper). Remove the celery, pork bone, and chicken. Pull the meat off of the chicken and put back in to the pot. Add the sauteed mixture, 2 large cans of small-diced tomatoes, three peeled and diced potatoes, one cup of bar-b-cue sauce, salt and pepper to taste, and about 1 1/2 tablespoons of Worcestershire sauce. Cook for about an hour. (At this point I put it in the refrigerator overnight so I can skim the grease off). When you are ready to serve, add frozen lima beans and corn and simmer for approximately an hour. My stew was not thick enough so I added some mash potatoes.