Longer Looks: People With Mental Disabilities Have A Vote; Genome Sequencing Raises Hope – Also Anxiety
Every week Shefali S. Kulkarni selects interesting reading from around the Web.
Bloomberg: My DNA Results Spur Alzheimer's Anxiety At $12,000 Cost
I may get Alzheimer’s disease, I was told after getting my DNA analyzed. I could suffer the consequences of an abnormal blood clot in my heart or my brain. Or perhaps I’ll suffer from a disease called primary myelofibrosis that’s caused by an overactive bone marrow. All of these were possible outcomes, based on my genetic profile. In each case, the test only gives an increased risk for disease, not a definitive diagnosis. In a few, Alzheimer’s for instance, there’s nothing I can do anyway. ... Robert Handin, a Harvard Medical School doctor who does genetic testing, [said]: "We're going through information overload. Everyone gets all this data and no one knows what to do with it." ... Yet mapping the genome is becoming a standard tool of medical care (John Lauerman, 11/6).
Time: What’s Making Adam Sick? A Contest to Sequence Three Kids’ Genomes
For more than a decade, doctors have been trying to figure out what’s behind the weakness and fatigue that caused 11-year-old Adam Foye to miss 60 days of school last year. His symptoms match up with centronuclear myopathy (CNM), a rare muscle disease, but genetic testing shows no signs of abnormalities in any gene linked to CNM. ... Traditionally, doctors have tried to figure out the cause of their illness by sequencing genes one by one or in small clusters. But for patients like Adam, the gene-by-gene approach is too time-consuming ... As the price of sequencing drops — it’s fallen from the billions to under $10,000 — many experts believe the test will become part of routine medical care. But before that happens, there are plenty of questions that still need to be addressed (Bonnie Rochman, 11/6).
The New York Times Magazine: Charmaine Yoest's Cheerful War On Abortion
Though she has helped usher in hard-hitting changes in women's health care, [Charmaine Yoest, head of Americans United for Life, a pro-life advocacy group] is especially good at sounding reasonable rather than extreme. ... For all her emphasis on women’s health, her end goal isn’t to make abortion safer. She wants to make the procedure illegal. She leaves no room for exceptions in the case of rape or incest or to preserve the health of the mother. She believes that embryos have legal rights and opposes birth control, like the IUD, that she thinks “has life-ending properties." Nor does Yoest advocate for reducing abortion by increasing access to birth control (Emily Bazelon, 11/2).
American Medical News: When The Rx Is An App
When Paul Mohabir, MD, noticed that more patients were arriving with smartphones in their hands, he thought some of the apps he used would be as valuable for them as they were for him. Since then, he has found smartphones to be a great tool to keep patients engaged and more compliant. He thinks the ways they are used are only going to grow. There has been so much buzz about the potential benefits of mobile health — known as mHealth in health IT circles — that several organizations have formed to promote mobile health solutions and study their efficacy and potential risks. Discussions are taking place in exam rooms across the country about how a $1 app could be a viable alternative to prescribing a medication and help patients monitor their health (Pamela Lewis Dolan, 11/5).
American Medical News: Clearing Up Confusion On Advance Directives
The patient was near death when emergency physician Ferdinando Mirarchi, DO, was called into a hospital room by frantic medical staff. The man was in cardiac arrest and needed to be shocked with a defibrillator. But because he had a living will, the health professionals at his side were uncertain how to proceed. ... They "assumed they shouldn't treat him. I came in and shocked the patient," [Dr. Mirachi said.] The man survived. However, such misinterpretations of end-of-life documents too often result in lost lives or unwanted care, said Dr. Mirarchi, medical director of the Dept. of Emergency Medicine at UPMC Hamot Medical Center in Erie, Pa. ... A series of surveys by QuantiaMD, an online physician learning collaborative, found that nearly half of health professionals misunderstood the components of living wills. Ninety percent of those surveyed were physicians (Alicia Gallegos, 10/29).
Mother Jones: Protecting The Voting Rights Of People With Mental Disabilities
Arizona is one of 14 states that categorically bar people who are under guardianship or are judged to be mentally "incompetent" or "incapacitated" from voting, according to the Bazelon Center for Mental Health Law. Although all but 11 states have disability-related voting restrictions, laws that impose uniform bans on people who are under guardianship or judged to be incompetent disproportionately target adults with disabilities or mental illness, including veterans with traumatic brain injury, seniors with dementia, and people with autism. These laws are "inherently biased" and violate constitutional guarantees of equal protection and due process, says Lewis Bossing, a senior staff attorney at the Bazelon Center (Deanna Pan, 11/5).