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Emily Horwitz

Scientists Make Progress in Tailor-Made Organs - NYTimes.com - 0 views

www.nytimes.com/...ess-in-tailor-made-organs.html

science biomedical engineering nytimes bioethics stem cells

shared by Emily Horwitz on 14 Nov 12 - No Cached
  • Emily Horwitz on 14 Nov 12
     
    An intriguing article about a more bioethically non-controversial way of reconstructing damaged organs in the body.
ilanaprincilus06

Civil Rights Office At HHS Fights Discrimination Of Disabled People In Pandemic : NPR - 0 views

www.npr.org/...mination-of-people-with-disabi

Discrimination Disabilities

shared by ilanaprincilus06 on 16 Jan 21 - No Cached
  • Civil rights officials at the Department of Health and Human Services issued a series of actions to protect people with disabilities from health care discrimination by medical providers during the pandemic.
  • start of a process to write regulations that explicitly prohibit medical workers from denying care to people with disabilities
  • to assure that people with disabilities and older people are not passed over for scarce care, like drug treatments and ventilator
  • ...9 more annotations...
  • "People will not be subject to age or disability discrimination when the going gets tough."
  • The new OCR action makes clear that doctors cannot issue a blanket DNR and cannot substitute their subjective beliefs about the quality of a disabled person's life over the person's own wishes.
  • "that discrimination against persons with disabilities will be absolutely forbidden and stereotypes about their usefulness should never be part of a discussion when we allocate care."
  • it would become a significant expansion of disability civil rights law.
  • But a final rule exists in draft form, according to a source at HHS, with hopes that new Biden Administration officials will pick it up.
  • include language to guarantee doctors will not pressure patients to sign Do Not Resuscitate orders and not exclude people from treatment based on their disability alone.
  • The steps taken by OCR to stop medical discrimination reflect the findings of a series of papers on bioethics and disability, issued by the National Council on Disability,
  • "Disability discrimination in health care is among the most insidious — with life and death consequences — and it's hard to root out,"
  • "sends an unequivocally clear message that we will not accept health care that relegates people with disabilities to last in line or 'lost cause.'"
Javier E

I Had My DNA Picture Taken, With Varying Results - NYTimes.com - 0 views

www.nytimes.com/...aken-with-varying-results.html

DNA genetic testing prediction personal medical biology science

shared by Javier E on 31 Dec 13 - No Cached
  • Scientists have identified about 10 million SNPs within our three billion nucleotides. But an entire genome sequencing — looking at all three billion nucleotides — would cost around $3,000; the tests I took examined fewer than a million SNPs.
  • “Imagine if you took a book and you only looked at the first letter of every other page,” said Dr. Robert Klitzman, a bioethicist and professor of clinical psychiatry at Columbia. (I am a graduate student there in his Master of Bioethics program.) “You’re missing 99.9 percent of the letters that make the genome. The information is going to be limited.”
  • the major issue, experts say, is that the causes of most common diseases remain unknown. Genes account for just 5 to 20 percent of the whole picture.
  • ...5 more annotations...
  • “Your results are not the least bit surprising,” he told me. “Anything short of sequencing is going to be short on accuracy — and even then, there’s almost no comprehensive data sets to compare to.”
  • “Even if they are accurately looking at 5 percent of the attributable risk, they’ve ignored the vast majority of the other risk factors — the dark matter for genetics — because we as a scientific community haven’t yet identified those risk factors,”
  • There are only 23 diseases that start in adulthood, can be treated, and for which highly predictive tests exist. All are rare, with hereditary breast cancer the most common. “A small percentage of people who get tested will get useful information,” Dr. Klitzman said. “But for most people, the results are not clinically useful, and they may be misleading or confusing.”
  • To be sure, my tests did provide some beneficial information. They all agreed that I lack markers associated with an increased risk of breast cancer and Alzheimer’s. That said, they were testing for only a small fraction of the genetic risks for these diseases, not for rare genetic variants that confer much of the risk. I could still develop those diseases, of course, but I don’t have reason to pursue aggressive screenings as I age.
  • He added: “If you want to spend money wisely to protect your health and you have a few hundred dollars, buy a scale, stand on it, and act accordingly.”
jmfinizio

Opinion: Gaming the vaccine system to jump the line isn't fair - CNN - 0 views

www.cnn.com/...index.html

vaccine cnn system opinion

shared by jmfinizio on 15 Jan 21 - No Cached
  • the Department of Health and Human Services announced a change in its Covid-19 vaccine distribution plan, an effort step up the grossly insufficient number of vaccinations that have been administered to date.
  • the administration will now release all available doses of the vaccine.
  • well-connected friends and community members who have managed to get vaccinated against Covid-19, even though they meet no current criteria to join the front of the line.
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  • those at highest risk for getting sick from Covid-19, either because of their job or their underlying health status, should get first dibs.
  • These guidelines are supported by bioethical principles about the need to balance "priorities of minimizing societal disruption and preventing morbidity and mortality."
  • As a result, the system is open to manipulation
  • A first distribution option is to treat vaccination like a class list.
  • seniors lined up overnight to get the shot, putting their own health at risk for the chance to avert future infections.
  • This strategy clearly prioritizes those who are in-the-know, who have time to sit on hold, or who are willing (in the case of camping out overnight) to put their health at risk.
  • it's the conditions of scarcity that make fairness difficult to achieve.
  • Whether it's using the National Guard to assist in setting up vaccination centers, deploying mobile vans to access rural and urban populations, or working with community groups to increase uptake among at-risk populations, better is needed.
  • we must release all the available doses of the Covid-19 vaccines
  • To protect our communities, we must not be paralyzed by fairness -- or stop pursuing it.
johnsonel7

China Quietly Confirms a Third CRISPR-Edited Baby Has Been Born - 0 views

www.sciencealert.com/ms-there-s-a-third-crispr-baby

china bioethics

shared by johnsonel7 on 02 Jan 20 - No Cached
  • Given that China condemned He's research almost immediately after he announced the births of the twin babies, it's not particularly surprising to hear that the researcher is being punished for his controversial experiment.But included in Xinhua's latest report was a bit of news we thought we might never hear: a third gene-edited baby has officially been born.
  • The report doesn't include any additional information on the baby. We don't know its sex, its health status, whether the birth involved any complications - or if the baby is even still alive.But we do know this baby was born, meaning that at some point last year, there were not two, but three genetically engineered humans walking - or, more likely, crawling - the Earth
Javier E

Opinion | Cloning Scientist Hwang Woo-suk Gets a Second Chance. Should He? - The New Yo... - 0 views

www.nytimes.com/...cloning-science-fraud.html

research science fraud reproduction replication knowledge

shared by Javier E on 22 Jun 23 - No Cached
  • The Hwang Woo-suk saga is illustrative of the serious deficiencies in the self-regulation of science. His fraud was uncovered because of brave Korean television reporters. Even those efforts might not have been enough, had Dr. Hwang’s team not been so sloppy in its fraud. The team’s papers included fabricated data and pairs of images that on close comparison clearly indicated duplicity.
  • Yet as a cautionary tale about the price of fraud, it is, unfortunately, a mixed bag. He lost his academic standing, and he was convicted of bioethical violations and embezzlement, but he never ended up serving jail time
  • Although his efforts at cloning human embryos, ended in failure and fraud, they provided him the opportunities and resources he needed to take on projects, such as dog cloning, that were beyond the reach of other labs. The fame he earned in academia proved an asset in a business world where there’s no such thing as bad press.
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  • it is comforting to think that scientific truth inevitably emerges and scientific frauds will be caught and punished.
  • Dr. Hwang’s scandal suggests something different. Researchers don’t always have the resources or motivation to replicate others’ experiments
  • Even if they try to replicate and fail, it is the institution where the scientist works that has the right and responsibility to investigate possible fraud. Research institutes and universities, facing the prospect of an embarrassing scandal, might not do so.
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