House passes law to allow newborn DNA screening without consent
House Resolution 1281, the Newborn Screening Saves Lives Reauthorization Act passed the House on June 24th with a voice vote only. Considering that the Newborn Screening Act has been around since the 1960’s and has a track record of identifying treatable disease early enough to save lives, this may not seem significant. The last time this act was updated was under George Bush in 2007 where genetic testing was added beyond the filter paper testing that had been done with blood taken from your child’s heel stick shortly after birth. That test was used for decades to identify things like phenylketonuria which is easily treated with diet if detected but can cause mental retardation if not treated. At that time NBSSLS expanded the authorizations and duties of the Health Resources and Services Administration in dealing with newborn screening and “allowed HRSA to spearhead the creation of federal recommendations on newborn screening, and assists State programs in meeting these requirements.”
But Stop EdLibertyWatch alerted members that this new bill, sponsored by Rep. Lucille Roybal-Allard (D-CA-40) goes further to allow:
1) No Parent Consent Required for Testing
2) Long-Term Surveillance
3) Nationalized Newborn Screening
4) Intrusive Labeling, Profiling and Sharing
5) Genetic Research on Newborns
6) Genetic Testing of Newborns for Conditions Not Yet Determined Appropriate for Newborn Screening.
7) $99.5 Million Price Tag
This is a classic government progression from “Let us do a little something to help you” to “You will do as we say and you have no right to refuse.”
NBSSLA originally sought to provide parents with potentially life saving information about their children by seeding federally money into states to pay for such screening. It was an offered, though sporadic, service. That morphed into a mandatory screening program that tested for 29 disorders but at least kept the information between the parents and the doctors. The reauthorization in 2007 was a significant shift in that it started focusing on heritable disorders, required treatment follow up and established a a web accessible central clearinghouse of resources pertaining to newborn screening. This clearinghouse, awarded to Genetic Alliance in 2009 by HRSA, contains data on newborn screening quality performance indicators. They launched the clearninghouse, called Babys First Test to increase awareness, knowledge, and understanding of NBS services and diseases that are screened, but also to increase the knowledge and understanding of all stakeholders including” industry representatives.” These industry representatives include government agencies and private agencies that offer additional screening services to families.
HRSA itself has been around since the 30’s but it was established to “provide health care to people who are geographically isolated, economically or medically vulnerable.” See by saying they cover people who are medically vulnerable, which used to mean people like those ins HIV/AIDS, they can now cover everyone because they say “pregnant women, mothers and their families” are groups they are destined to help. Now it covers everyone and can even mandate you do certain things, like provide blood samples for DNA testing of your newborn. HRSA is also oversees organ, bone marrow and cord blood donation. It compensates individuals harmed by vaccination, and maintains databases that protect against health care malpractice, waste, fraud and abuse. This perpetual growth in scope is part of the life cycle of a government created program.
A government that seems concerned about public health but impotent to stop the disease crossing our borders brought by thousands of illegal border crossers is going to “protect[s] the most vulnerable members of our society: newborn infants” as Chuck Todd said in 2007 when introducing the last version of NBSSLA legislation, co-sponsored by Senator Orrin Hatch? How is that in any way believable? Just goes to show what our government can do to a citizen that they don’t dare do to an illegal invader.
But so much of this is old news. Why worry about it now?
First, because the bill passed the House with barely any notice. There wasn’t an official roll call so we don’t even know who voted for it. It is sitting on Harry Reid’s desk (along with about 1,000 other bills) and is believed to have only a 27% chance of being passed on to the President. This log jamb may be the only thing that saves us.
Secondly, we should be concerned because the state of Rhode Island, in their grant application for the third round of funding for Race To The Top Early Education Challenge, proposed their, “early learning data system will be linked to both the state’s K-12 data system and the state’s universal newborn screening and health data system, helping to identify children with high needs, track participation in programs, and track children’s development and learning.” How long before all the other states, who are being coerced into developing early childhood education programs and who already got State Fiscal Stabilization Funds to set up the Longitudinal Student Data Systems and HRSA funds to do the newborn screening, follow suit?
The helpful government screening of your child’s heel stick blood to look for treatable diseases has evolved into a tracking system that may link genetic markers to learning disabilities in need of early intervention. At least that is what they would like you to believe. Unfortunately the reality is that we have given the equivalent of an iPhone 8 to a toddler.
Geneticist Razib Khan, who recently obtained the full genomic sequence on his as yet unborn son, wrote about where he sees the field of genetics going. He believes himself to be a libertarian leaning conservative. He thinks the field of genomics will be “part of a broader suite of information services, probably centralized, filtered, and curated, by a helper artificial intelligence.”
Services like 23andme which promise to provide you your own personal genome are amassing the kind of genetic data needed to work on the models predicted by Khan. For now they draw people to their service primarily for the genealogical information they provide. They are not yet ready for disease prediction or treatment capability. “Personal genomics enthusiasts overestimated how involved the average person on the street was going to want to get in terms of their own interpretations of returned results. The reality is that even genetic counselors can barely keep up.” There is a growing glut of data, but little understanding of its meaning. The confidence by the political community in being able to predict heritable disease is unwarranted. Khan says so many medical doctors and even genetic counselors are often wrong, unclear, or confused, on many of the details of genetic science and offer poor advice to patients.
This may make you think maybe we should only be listening to the geneticists themselves. However, Khan claims most individuals deeply involved in genetics are at most “libertarian-leaning moderate liberals, and more often conventional liberal Democrats.” That does not inspire confidence in me and not because of the D. Conventional liberals feel a strong need to act. They feel bad when bad things, like inherited diseases, happen and they want to make the bad feeling go away by doing something, even if that something is not effective. That means even the geneticists might be willing to recommend actions when all the data is not yet in.
Khan looks ahead to a day, far far in the future because “the information overload is going to get worse and worse, not better”, where we might expect to see something like “an artificial intelligence which talks to you through an ear-bud all day, and takes your genomic, epigenomic, and biomarker status into account when advising you on whether you should pass on the dessert.”
The only thing he sees stopping that future in America are institutional road-blocks. I assume he is referring to privacy regulation, a belief by the general public that it is nobody’s business but their own whether they choose to have dessert or not. More importantly, the data show that if the patient doesn’t like the diagnosis, understand the treatment or come from the right economic sector they aren’t going to get or follow the treatment. It has been generally acknowledged for years that non-adherence rates for chronic illness regimens and for lifestyle changes are ∼ 50%. The genetic models would have to be be incontrovertibly correct in their causative predictions for people to change their behavior and we are decades from that kind of accuracy. That won’t stop government, who is soon going to be the provider of your health care, from trying to mandate your behavior the regulation and policy. The first step is the collection of the incredibly huge amount of undigested data, even if they have to do it against your wishes or without your knowledge.
Khan is more concerned that the American ideology of owning our own lives is going to be a roadblock to the development of “high-tech lifestyle advisement firms, whose aims are to replace the whole gamut of self-help sectors with rationally designed applications and appliances.” Those are coming, he says, but they may just take root overseas first.
In his paper, Rumors of the death of consumer genomics are greatly exaggerated, Khan dismissed such American concepts of privacy.
Of course such a scenario above begs the question whether people would be comfortable in a semipermeable soup of information floating in the future cloud. But fortunately, or unfortunately, some of the most powerful and innovative firms today are making Scott McNealy’s prediction of a post-privacy future come alive. In the simplest of terms, expectation of privacy evolves with technology. In particular, both Google and Facebook are pushing the public toward the direction of transparency in terms of personal data. For obvious reasons there is sensitivity in regards to medical information in the United States, but with universal coverage some of the concerns are likely to be obviated, while the body politic will also have an incentive to allow for greater information exchange to be leveraged into informing citizens as to the optimal path for a healthier lifestyle
There are a lot of things that we dabbled in first here in America, like eugenics, that really took off overseas and I am not sorry America stayed out of them, or at least didn’t capitalize on them like they did in those other countries. The tendency of government, bolstered by data no matter how weak, to act capriciously and then demand adherence by the governed is clear. Until we return to a state where we the people rule, not unresponsive government agencies, then the very act of collecting this kind of data will be the means of creating our own future shackles.