I listened to Governor Bentley’s State of the State address last night, and then read (and re-read it) online. Lots of broad statements, some tantalizing. I can’t comment yet on implications for Medicaid, until we see how the specifics are laid out in the actual budget. I’ll let you know as soon as I can. It sounded like he has figured out a way to use Education money for Medicaid. I have some guesses but no better than trying to figure out the end of an episode of “The Mentalist.”
I thought you might want to look at a few pieces of legislation related to healthcare. There are several pre-filed bills, some of which I’m still researching. These include return to play for high school concussions, privacy for genetic diseases, treatment and diagnosis of bleeding disorders, definitions of controlled substances, personhood, drug screening for people who receive state healthcare benefits, healthcare provider conscience, and the multistate Healthcare Compact. I’m sure there will be others! Please let me know if there is a specific bill you want me to address.
Here’s one that looks fairly innocuous, on the face of it—HB 78, Genetic Information Privacy Act. I’m picking it first because even though I don’t have any fiery emotions on the subject, the implications are interesting and fun to think about. I promise to get the more serious stuff later. Think of this as a beach read day or a warm-up.
I suppose the intention is to keep employers from discriminating against people who are at higher risk of disability. But I think the necessary privacy is already covered under existing healthcare law. Anybody know why this one got written? There’s always a back-story.
Patients (or representatives) would have to sign specific, separate consent for genetic testing that includes the risks and benefits. Fortunately, the state newborn screens that test for important conditions like cystic fibrosis are excluded. Release of the information would also have to be specifically signed for.
First, look at how “Genetic Information” and testing are defined. The bill acknowledges that it isn’t just DNA but the proteins coded for by the DNA—so things like blood type would be included. Remember those cool little taster strips from science class, the ones some of your friends found nasty and others not? The ability to sense that bitter taste is a genetic property, and one’s taster status would be genetic information.
The bill tries to prevent such over-application by saying it only applies to genetic information related to increased risk of a disease or disorder. They probably don’t realize how much research has been done related to increased disease risk for various genetic markers like blood type, eye color, hair color, taster status, etc. And new information comes out constantly. Since this law doesn’t just apply to physicians but to all of us, with penalties for releasing genetic information about another person without written consent, imagine the implications!
Even one’s gender is genetic (or starts that way prior to surgery)—we are XX, XY or some variation. And our sex chromosomes do definitely predispose us to various illnesses. I know that sounds silly and that the legislature doesn’t intend to punish us for publicly saying we know a certain person is male or female—but in between that and saying a person has something like Trisomy 21 (Down Syndrome), there is a lot of gray area. Way more gray area than they realize.
Even for the specific conditions like Trisomy 21, this bill creates new and unnecessary paperwork. We have to fill out tons of forms for camp, therapy authorizations, etc, where a child’s specific problem is supposed to be identified, at the parent’s request. Will we now have to complete a separate consent form for each of these?
The regulations about storage of samples doesn’t make sense either. It only applies to specimens that were collected specifically for genetic testing—but don’t they realize that all our cells have DNA? Why should a sample be protected differently just based on initial intention, when the same information is available from all sorts of other biologic samples? Including your hairbrush? It wouldn’t substantially protect us from misuse of our genetic information. And it could add more cost to patients for changes in storage practices.
We already have very strict medical privacy laws to protect our healthcare information. We have laws against discriminating against people on the basis of disability. This bill is probably very well-intentioned but I think all it would do is make paperwork and confusion. Let’s don’t!
