I’ve just written the final section of the tenth edition of my human genetics textbook. The end is about Stephen Quake, the Stanford bioengineer whose genomic highlights were laid bare in the May 1, 2010 issue of The Lancet (“Clinical assessment incorporating a personal genome"; http://www.thelancet.com). 

When I wrote the first edition 20 years ago, sequencing a single gene took years. I couldn’t imagine a day when genomes could be sequenced in days and when anyone could order dozens of DNA tests just by tapping on a keyboard, learning results without the filter of a medical professional. 

Dr. Quake, a pretty healthy sort, had his genome sequenced because a cousin died at age 19 from heart disease (and he’s co-inventor of the sequencer). His results confirmed what he knew from a good old-fashioned pedigree, but also told him that a statin would work well and without side effects, yet the clot-preventer Plavix not so good. The rest? Maybe it’ll help him some day.

How much damage can one fraudulent researcher do, especially when supported by well-intentioned but misinformed celebrities? The answer it seems is quite a lot. By now most everyone is familiar with the study published in the Lancet in 1998 by no-longer Dr. Andrew Wakefield.

I say no longer "Dr." because his medical license has been revoked. This occurred as well as denunciation of the paper by his coauthors and retraction of the paper by the Lancet. It turns out as documented in the British Medical Journal and accompanying editorial that the study was an elaborate fraud committed under a major financial conflict of interest. Wakefield had received payment from a law firm undertaking legal action against vaccine manufacturers.

By now numerous expensive large-scale studies have settled the science failing to find the autism vaccine link. This is settled science; we have an answer. I will note, however, that well-intentioned celebrity champions of Wakefield remain unconvinced. It is the alliance between Wakefield and his celebrity advocates that is particularly insidious. Time and resources that could have addressed the real causes of autism instead went to refuting these fraudulent claims. The public relations initiative they led resulted in a significantly decreased rate of childhood vaccinations, an increase in children becoming sick and sometimes dying from preventable illnesses. Wakefield bears responsibility for this. His ill-advised supporters share that responsibility.

The recent decision of the Obama strategists to reverse their inclusion of reimbursement for  the end of life discussions was alarming. I have never understood the “death panel” label  when referencing discussions between physicians and patients, about their values and choices as their lives progress toward that final chapter. What seems to have escaped the public  debate, is that the patient can indeed direct that aggressive care be delivered. Questions about what interventions to use in case of breathing or heart problems for example, have multiple choice answers. The typical living will is set up to allow patients to opt for comfort care in dire circumstances because they were developed to allay the fears of patients who had seen family members and friends undergo painful and prolonged dying, and they didn’t want to have that happen to them.  The Obama team is aware of the political capital it would cost to fight this fight and have chosen to spend it elsewhere…so be it. Our efforts to educate the public should  then be reinvigorated so that patients can once again take the lead and direct their own health care choices.

The first page of the Sunday Business section of the January 2, 2011, New York Times carried an article by Andrew Pollack titled “Coupons for Patients, but Higher Bills for Insurers.” Click here for the article.

The gist is that patients somehow obtain discount coupons for a particular antibiotic for acne, they ask their physicians to prescribe the medicine, when they get their prescription filled they pay a token amount or smaller co-pay, and the insurer pays the balance. However, in this case, the name brand antibiotic is relatively expensive and there is a generic alternative available at a much lower cost. The insurer is stuck paying the greater cost, a cost that has to be distributed to other subscribers in higher premiums.

Less clear on its face is another health care justice dilemma that appeared inside the Front Page section: “But in recent months, Mr. Cuomo has vowed to shrink the number of state agencies by one-fifth and to make substantial cuts to the state’s Medicaid program, the most costly in the nation.” Take a look at the New York Times article on January 1, 2011 by Hakim and Confessore, “Cuomo Promises Emergency Plan on Finance Woes.”

A synopsis of the New York State Medicaid report may be found here.