National Institutes of healthNational Institutes of health
For Some Republicans, NIH Cuts Are a Nonstarter
Trump Administration Proposes Big Cuts In Medical Research
Should Every Newborn Undergo Genetic Testing?
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A Zika vaccine or a treatment for superbugs?\u003c/p>\n\u003cp>In his budget blueprint Thursday, President Donald Trump called for cutting $5.8 billion from the National Institutes of Health. That's a staggering 18 percent drop for the $32 billion agency that funds much of the nation's research into what causes different diseases and what it will take to treat them.\u003c/p>\n\u003cp>Trump's proposal would roll back NIH's 2018 budget to about what it was in 2003. The president called for a \"major reorganization\" of NIH to stress the \"highest priority research,\" but only specifically targeted for elimination the $69 million Fogarty International Center that focuses on global health and has played a big role in HIV research abroad.\u003c/p>\n\u003cp>But it's far from clear if Congress will agree to the cuts. The NIH has long experienced bipartisan support among lawmakers, who awarded the agency an extra $2 billion in 2016.\u003c/p>\n\u003cp>Here is coverage from around the web, pointing to Republican and other opposition to the proposed cuts. ...\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003ca href=\"http://www.mcclatchydc.com/news/politics-government/congress/article138974053.html\">Republicans queasy about Trump’s cuts to medical research\u003c/a> (McClatchy)\u003c/p>\n\u003cblockquote>\u003cp>President Donald Trump’s budget would slash funding for the National Institutes of Health by nearly $6 billion, or 19 percent, a proposal that’s likely to run into staunch opposition from conservatives within Trump’s own party.\u003c/p>\n\u003cp>Two years ago, Republicans helped secure the largest budget increase for NIH in more than a decade. Led by Missouri Sen. Roy Blunt and Rep. Kevin Yoder and Sen. Jerry Moran of Kansas, the effort resulted in a $2 billion jump in funding and enabled the NIH to give out 1,147 more grants nationwide.\u003c/p>\n\u003cp>The GOP lawmakers again worked across the aisle in November to pass the bipartisan Cures Act, which would allocate more money to the NIH. It had less than Blunt, Yoder and Moran had wanted, but more than President Barack Obama had requested in his budget.\u003c/p>\n\u003cp>So when Trump released his budget on Thursday, proposing an NIH budget of about $26 billion, it quickly became apparent that the cuts to medical research were one of the few proposals that Republicans would be willing to criticize openly.\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"http://theweek.com/speedreads/686585/gop-congressman-slams-trumps-proposed-cuts-nih-cdc-youre-much-more-likely-die-pandemic-than-terrorist-attack\">GOP congressman on Trump's proposed cuts to NIH, CDC: 'You're much more likely to die in a pandemic than a terrorist attack'\u003c/a> (The Week)\u003c/p>\n\u003cblockquote>\u003cp>(Rep. Tom) Cole argued that defense spending — which Trump's budget blueprint calls for ratcheting up by $54 billion — is no more important than investing in health research. \"You're much more likely to die in a pandemic than a terrorist attack, and so that's part of the defense of the country as well,\" Cole said. \"The CDC is what protects you from things like Ebola and Zika. The NIH, we have 1.6 million Americans a year that contract cancer. About 600,000 die. That is more people than died in the Civil War, the bloodiest war in American history.\"\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"https://www.theatlantic.com/politics/archive/2017/03/trumps-budget-cuts-nih-funding-by-20-percent/519771/\" target=\"_blank\">Trump's Budget Proposal Cuts NIH Funding by 20 Percent\u003c/a> (The Atlantic)\u003c/p>\n\u003cblockquote>\u003cp>The agency, which distributes funding to some 300,000 scientists worldwide, has seen its funding wax and wane over the last 20-odd years. In the late 1990s and early 2000s, Congress doubled its funding each year, infusing the agency with cash. But for years afterward, the budgets stayed stagnant. Funding advocates explain that NIH didn’t lose its bipartisan support—other issues, like national defense, simply became more pressing. This hurt the agency’s ability to fund scientists’ research grants and labs’ ability to retain young researchers, and made planning for multi-year projects extremely difficult.\u003c/p>\n\u003cp>Scientists and NIH officials alike were encouraged by the recent enthusiasm around NIH. In an interview last year, agency Director Francis Collins said he hoped Congress would begin “a trend to get us back on a stable, predictable, upward trajectory.” At the time, lawmakers seemed mostly on board with that plan, as the Republican chairs of the relevant funding panels both supported future budget bumps. Congress hasn’t settled on funding for the 2017 fiscal year, but legislators planned for another NIH increase of up to $2 billion.\u003c/p>\n\u003cp>The question now is how closely congressional Republicans will conform to the president’s proposal as they craft their own budgets, and how strongly the president’s staff will push for this particular cut.\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"https://www.forbes.com/sites/matthewherper/2017/03/16/trump-nih-cuts-would-be-catastrophic-event-says-bush-era-nih-chief/#f055a74789c6\">Trump NIH Cuts Would Be 'Catastrophic Event,' Says Bush-Era NIH Chief\u003c/a> (Forbes)\u003c/p>\n\u003cblockquote>\u003cp>Elias Zerhouni was nominated as director of the National Institutes of Health by George W. Bush in 2002, a role in which he served until 2008. Since 2011, he has run research and development at Sanofi, the world's fifth-largest drug company by sales. He says he's disturbed by the budget proposal of President Donald Trump. ...\u003c/p>\n\u003cp>\"It will be a catastrophic event because the NIH funds grants over four or five years and therefore only has 20% of its budget to give at any one year,\" Zerhouni says. \"Therefore, if you cut it by $6 billion it means next year there will be no grants. It’s really ill-advised, I think, to change budgets so drastically so quickly. It will be very detrimental, especially on young investigators or new investigators, new science. It will set back the NIH significantly after years of stagnation, but recent support from Congress. I find it disturbing, to be honest with you.\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"http://www.latimes.com/science/sciencenow/la-sci-sn-trump-budget-nih-20170316-story.html\">20% cut to NIH budget would leave Americans more vulnerable to cancer and other diseases, experts warn\u003c/a> (L.A. Times)\u003c/p>\n\u003cblockquote>\u003cp>Even scientists that have been critical of the NIH rallied to its defense.\u003c/p>\n\u003cp>J. Craig Venter, a genetics pioneer and chief executive of the J. Craig Venter Institute in La Jolla, said the proposed cuts would forfeit American primacy in a sector where the United States enjoys “absolutely dominant leadership in the world.”\u003c/p>\n\u003cp>“This is an engine that drives our entire economy,” he said. “Our federal money can be better spent. But cutting these budgets will only make it 10 times worse.”\u003c/p>\n\u003cp>Faced with bare-bones budgets, Venter said, the NIH will put an end to any high-risk research. Like a drug company whose new CEO cuts costs by axing research and development, the U.S. could soon see its pipeline of innovative therapies has gone dry.\u003c/p>\n\u003cp>“The ones that suffer most are new investigators with new ideas,” he said. “It’ll just be a disaster for the U.S. economy.”\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"http://www.vox.com/policy-and-politics/2017/3/16/14940444/2018-budget-trump-science-nih\">Trump’s budget is everything scientists have been fearing\u003c/a> (Vox)\u003c/p>\n\u003cblockquote>\u003cp>Already, competition for NIH grants is intense. Its funding has basically plateaued over the past decade. At the same time, the cost of research keeps increasing, and an ever-growing pool of PhDs is competing for a relatively smaller pile of grant money.\u003c/p>\n\u003cp>Consider this: In 2000, more than 30 percent of NIH grant applications got approved. Today, it’s closer to 17 percent. It’s not crazy math: The less money there is to go around, the fewer projects get funded.\u003c/p>\n\u003cp>According to Hourihan, when the NIH’s budget dropped 5 percent from sequestration cuts, they had to cut around 700 individual grants (out of about 9,000). With a 20 percent cut, “we’re likely talking about [grant] cuts in the hundreds, if not the thousands,” he says.\u003c/p>\u003c/blockquote>\n\u003cp>The first hearing by the subcommittee that oversees NIH is scheduled for Tuesday.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Associated Press contributed to this report.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Trump's proposal would roll back NIH's 2018 budget to about what it was in 2003. But it's far from clear if Congress will agree to the cuts, as NIH has long experienced bipartisan support.","status":"publish","parent":0,"modified":1489782825,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":33,"wordCount":1273},"headData":{"title":"For Some Republicans, NIH Cuts Are a Nonstarter | KQED","description":"Trump's proposal would roll back NIH's 2018 budget to about what it was in 2003. But it's far from clear if Congress will agree to the cuts, as NIH has long experienced bipartisan support.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"For Some Republicans, NIH Cuts Are a Nonstarter","datePublished":"2017-03-17T19:59:35.000Z","dateModified":"2017-03-17T20:33:45.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"356209 https://ww2.kqed.org/futureofyou/?p=356209","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/03/17/for-some-republicans-nih-cuts-are-a-nonstarter/","disqusTitle":"For Some Republicans, NIH Cuts Are a Nonstarter","source":"KQED Future of You","nprByline":"KQED Science and Wires","path":"/futureofyou/356209/for-some-republicans-nih-cuts-are-a-nonstarter","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>What goes on the chopping block: Research into cancer or Alzheimer's? A Zika vaccine or a treatment for superbugs?\u003c/p>\n\u003cp>In his budget blueprint Thursday, President Donald Trump called for cutting $5.8 billion from the National Institutes of Health. That's a staggering 18 percent drop for the $32 billion agency that funds much of the nation's research into what causes different diseases and what it will take to treat them.\u003c/p>\n\u003cp>Trump's proposal would roll back NIH's 2018 budget to about what it was in 2003. The president called for a \"major reorganization\" of NIH to stress the \"highest priority research,\" but only specifically targeted for elimination the $69 million Fogarty International Center that focuses on global health and has played a big role in HIV research abroad.\u003c/p>\n\u003cp>But it's far from clear if Congress will agree to the cuts. The NIH has long experienced bipartisan support among lawmakers, who awarded the agency an extra $2 billion in 2016.\u003c/p>\n\u003cp>Here is coverage from around the web, pointing to Republican and other opposition to the proposed cuts. ...\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"http://www.mcclatchydc.com/news/politics-government/congress/article138974053.html\">Republicans queasy about Trump’s cuts to medical research\u003c/a> (McClatchy)\u003c/p>\n\u003cblockquote>\u003cp>President Donald Trump’s budget would slash funding for the National Institutes of Health by nearly $6 billion, or 19 percent, a proposal that’s likely to run into staunch opposition from conservatives within Trump’s own party.\u003c/p>\n\u003cp>Two years ago, Republicans helped secure the largest budget increase for NIH in more than a decade. Led by Missouri Sen. Roy Blunt and Rep. Kevin Yoder and Sen. Jerry Moran of Kansas, the effort resulted in a $2 billion jump in funding and enabled the NIH to give out 1,147 more grants nationwide.\u003c/p>\n\u003cp>The GOP lawmakers again worked across the aisle in November to pass the bipartisan Cures Act, which would allocate more money to the NIH. It had less than Blunt, Yoder and Moran had wanted, but more than President Barack Obama had requested in his budget.\u003c/p>\n\u003cp>So when Trump released his budget on Thursday, proposing an NIH budget of about $26 billion, it quickly became apparent that the cuts to medical research were one of the few proposals that Republicans would be willing to criticize openly.\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"http://theweek.com/speedreads/686585/gop-congressman-slams-trumps-proposed-cuts-nih-cdc-youre-much-more-likely-die-pandemic-than-terrorist-attack\">GOP congressman on Trump's proposed cuts to NIH, CDC: 'You're much more likely to die in a pandemic than a terrorist attack'\u003c/a> (The Week)\u003c/p>\n\u003cblockquote>\u003cp>(Rep. Tom) Cole argued that defense spending — which Trump's budget blueprint calls for ratcheting up by $54 billion — is no more important than investing in health research. \"You're much more likely to die in a pandemic than a terrorist attack, and so that's part of the defense of the country as well,\" Cole said. \"The CDC is what protects you from things like Ebola and Zika. The NIH, we have 1.6 million Americans a year that contract cancer. About 600,000 die. That is more people than died in the Civil War, the bloodiest war in American history.\"\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"https://www.theatlantic.com/politics/archive/2017/03/trumps-budget-cuts-nih-funding-by-20-percent/519771/\" target=\"_blank\">Trump's Budget Proposal Cuts NIH Funding by 20 Percent\u003c/a> (The Atlantic)\u003c/p>\n\u003cblockquote>\u003cp>The agency, which distributes funding to some 300,000 scientists worldwide, has seen its funding wax and wane over the last 20-odd years. In the late 1990s and early 2000s, Congress doubled its funding each year, infusing the agency with cash. But for years afterward, the budgets stayed stagnant. Funding advocates explain that NIH didn’t lose its bipartisan support—other issues, like national defense, simply became more pressing. This hurt the agency’s ability to fund scientists’ research grants and labs’ ability to retain young researchers, and made planning for multi-year projects extremely difficult.\u003c/p>\n\u003cp>Scientists and NIH officials alike were encouraged by the recent enthusiasm around NIH. In an interview last year, agency Director Francis Collins said he hoped Congress would begin “a trend to get us back on a stable, predictable, upward trajectory.” At the time, lawmakers seemed mostly on board with that plan, as the Republican chairs of the relevant funding panels both supported future budget bumps. Congress hasn’t settled on funding for the 2017 fiscal year, but legislators planned for another NIH increase of up to $2 billion.\u003c/p>\n\u003cp>The question now is how closely congressional Republicans will conform to the president’s proposal as they craft their own budgets, and how strongly the president’s staff will push for this particular cut.\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"https://www.forbes.com/sites/matthewherper/2017/03/16/trump-nih-cuts-would-be-catastrophic-event-says-bush-era-nih-chief/#f055a74789c6\">Trump NIH Cuts Would Be 'Catastrophic Event,' Says Bush-Era NIH Chief\u003c/a> (Forbes)\u003c/p>\n\u003cblockquote>\u003cp>Elias Zerhouni was nominated as director of the National Institutes of Health by George W. Bush in 2002, a role in which he served until 2008. Since 2011, he has run research and development at Sanofi, the world's fifth-largest drug company by sales. He says he's disturbed by the budget proposal of President Donald Trump. ...\u003c/p>\n\u003cp>\"It will be a catastrophic event because the NIH funds grants over four or five years and therefore only has 20% of its budget to give at any one year,\" Zerhouni says. \"Therefore, if you cut it by $6 billion it means next year there will be no grants. It’s really ill-advised, I think, to change budgets so drastically so quickly. It will be very detrimental, especially on young investigators or new investigators, new science. It will set back the NIH significantly after years of stagnation, but recent support from Congress. I find it disturbing, to be honest with you.\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"http://www.latimes.com/science/sciencenow/la-sci-sn-trump-budget-nih-20170316-story.html\">20% cut to NIH budget would leave Americans more vulnerable to cancer and other diseases, experts warn\u003c/a> (L.A. Times)\u003c/p>\n\u003cblockquote>\u003cp>Even scientists that have been critical of the NIH rallied to its defense.\u003c/p>\n\u003cp>J. Craig Venter, a genetics pioneer and chief executive of the J. Craig Venter Institute in La Jolla, said the proposed cuts would forfeit American primacy in a sector where the United States enjoys “absolutely dominant leadership in the world.”\u003c/p>\n\u003cp>“This is an engine that drives our entire economy,” he said. “Our federal money can be better spent. But cutting these budgets will only make it 10 times worse.”\u003c/p>\n\u003cp>Faced with bare-bones budgets, Venter said, the NIH will put an end to any high-risk research. Like a drug company whose new CEO cuts costs by axing research and development, the U.S. could soon see its pipeline of innovative therapies has gone dry.\u003c/p>\n\u003cp>“The ones that suffer most are new investigators with new ideas,” he said. “It’ll just be a disaster for the U.S. economy.”\u003c/p>\u003c/blockquote>\n\u003cp>\u003ca href=\"http://www.vox.com/policy-and-politics/2017/3/16/14940444/2018-budget-trump-science-nih\">Trump’s budget is everything scientists have been fearing\u003c/a> (Vox)\u003c/p>\n\u003cblockquote>\u003cp>Already, competition for NIH grants is intense. Its funding has basically plateaued over the past decade. At the same time, the cost of research keeps increasing, and an ever-growing pool of PhDs is competing for a relatively smaller pile of grant money.\u003c/p>\n\u003cp>Consider this: In 2000, more than 30 percent of NIH grant applications got approved. Today, it’s closer to 17 percent. It’s not crazy math: The less money there is to go around, the fewer projects get funded.\u003c/p>\n\u003cp>According to Hourihan, when the NIH’s budget dropped 5 percent from sequestration cuts, they had to cut around 700 individual grants (out of about 9,000). With a 20 percent cut, “we’re likely talking about [grant] cuts in the hundreds, if not the thousands,” he says.\u003c/p>\u003c/blockquote>\n\u003cp>The first hearing by the subcommittee that oversees NIH is scheduled for Tuesday.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Associated Press contributed to this report.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/356209/for-some-republicans-nih-cuts-are-a-nonstarter","authors":["byline_futureofyou_356209"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_1214","futureofyou_1176","futureofyou_22","futureofyou_1212"],"featImg":"futureofyou_356259","label":"source_futureofyou_356209"},"futureofyou_355752":{"type":"posts","id":"futureofyou_355752","meta":{"index":"posts_1591205157","site":"futureofyou","id":"355752","score":null,"sort":[1489695155000]},"guestAuthors":[],"slug":"trump-administration-proposes-big-cuts-in-medical-research","title":"Trump Administration Proposes Big Cuts In Medical Research","publishDate":1489695155,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>Biomedical research and public health are among the big losers in the Trump administration's proposed budget.\u003c/p>\n\u003cp>The \u003ca href=\"http://www.npr.org/2017/03/16/520379061/read-president-trumps-budget-blueprint\">proposal\u003c/a> promises:\u003c/p>\n\u003cul>\n\u003cli>A \"major reorganization\" in the National Institutes of Health, which supports most of the nation's research on diseases and treatments. That includes a cut of $5.8 billion, about 20 percent of NIH's $30 billion budget.\u003c/li>\n\u003cli>\"Reform\" of funding for the Centers for Disease and Prevention, which works to prevent, monitor and combat disease outbreaks. The budget mentions a $500 million block grant to states.\u003c/li>\n\u003cli>An additional $500 million for the Department of Health and Human Services to \"expand opioid misuse prevention efforts and to increase access to treatment and recovery services to help Americans who are misusing opioids get the help they need.\"\u003c/li>\n\u003cli>Investment in \"mental health activities that are awarded to high-performing entities and focus on high priority areas, such as suicide prevention, serious mental illness, and children's mental health.\" No specifics are provided.\u003c/li>\n\u003c/ul>\n\u003cp>Funding from the National Institutes of Health flows to more than 2,600 institutions around the country and creates more than 313,000 full- and part-time jobs, according to a \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750411/\">2016 study\u003c/a>. So it's not obvious how slashing billions from the NIH budget, as the Trump administration proposes, will bring more jobs to America.\u003c/p>\n\u003cp>That $5.8 billion cut represents a 20 percent reduction in the NIH budget, which is about $30 billion. The federal government hands out most of this funding rather than spending it on its own employees, but the budget proposal is not clear on how much of the spending cuts target grants to university scientists.\u003c/p>\n\u003cp>Federal research grant money flows primarily to universities, and they in turn spend billions to buy equipment and services from local companies. Economist Bruce Weinberg and colleagues at Ohio State University \u003ca href=\"http://science.sciencemag.org/content/344/6179/41.full\">looked at\u003c/a> what happened to federal research dollars that flowed to nine major Midwestern universities.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In 2012, these nine institutions received about $7 billion for research, more than half of which came from the NIH, the National Science Foundation and other funding agencies. Of that, the universities spent almost $1 billion on goods and services from U.S. vendors and subcontractors, the study found.\u003c/p>\n\u003cp>Of that, 16 percent went to vendors in the university's home county, over 16 percent was spent elsewhere in the state, and the balance was spread to companies across the United States.\u003c/p>\n\u003cp>University researchers buy chemicals and other ingredients needed for experiments and purchase laboratory equipment. There are entire industries devoted to supporting biomedical research.\u003c/p>\n\u003cp>\"We were surprised by how many were small, niche high-technology companies,\" Weinberg and his colleagues wrote.\u003c/p>\n\u003cp>\"Of course, science funding is not primarily a jobs or economic stimulus program,\" they added. After all, research is a long-term investment in knowledge and the driving force for economic growth.\u003c/p>\n\u003cp>The budget proposal doesn't include a specific funding figure for the Centers for Disease Control and Prevention, which had a budget of $7 billion in 2016. But the proposed budget says it \"reforms\" the CDC through a new $500 million block grant that would \"increase state flexibility and focus on the leading public health challenges to each state.\"\u003c/p>\n\u003cp>No additional details are included, but that could mean diverting those funds from the CDC's core budget to provide block grants to individual states.\u003c/p>\n\u003cp>\"We are encouraged to see that state health agency priorities, such as flexible funding to meet state and territorial public health needs and the public health Emergency Fund, are in the President's Budget,\" said Michael Fraser, executive director of the \u003ca href=\"http://www.astho.org/\">Association of State and Territorial Health Officials\u003c/a>, in an email.\u003c/p>\n\u003cp>\"Those are things we really do want to see,\" Fraser continued. \"However, the fact is that support for those priorities comes at what looks like a very significant cost to existing programs. The proposed reductions to HHS may have serious negative impacts on both federal and state responses to public health needs and that leaves many of us extremely concerned.\"\u003c/p>\n\u003cp>The budget also calls for the creation of a new \"Federal Emergency Response Fund\" that would be designed to \"rapidly respond to public health outbreaks,\" such as Zika. This is an idea that has been gaining support recently, especially in the wake of the Ebola outbreak in West Africa and the emergence of Zika as a threat to pregnant women and their babies.\u003c/p>\n\u003cp>President Obama's emergency funding request to respond to Zika got mired in politics in Congress. The budget doesn't specify how big this new fund would be.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The proposed budget is silent on the National Science Foundation, which provides about $7 billion a year in grants to researchers in many fields.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Trump+Administration+Proposes+Big+Cuts+In+Medical+Research&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"The National Institutes of Health, which funds research in treatments and cures, could lose 20 percent of its budget under the administration's proposal. More money would go for addiction treatment.","status":"publish","parent":0,"modified":1489695257,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":19,"wordCount":794},"headData":{"title":"Trump Administration Proposes Big Cuts In Medical Research | KQED","description":"The National Institutes of Health, which funds research in treatments and cures, could lose 20 percent of its budget under the administration's proposal. More money would go for addiction treatment.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Trump Administration Proposes Big Cuts In Medical Research","datePublished":"2017-03-16T20:12:35.000Z","dateModified":"2017-03-16T20:14:17.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"355752 https://ww2.kqed.org/futureofyou/?p=355752","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/03/16/trump-administration-proposes-big-cuts-in-medical-research/","disqusTitle":"Trump Administration Proposes Big Cuts In Medical Research","source":"KQED Future of You","nprByline":"Rob Stein\u003cbr />NPR Shots","nprImageAgency":"NIH/Flickr","nprStoryId":"520390147","nprApiLink":"http://api.npr.org/query?id=520390147&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"http://www.npr.org/sections/health-shots/2017/03/16/520390147/trump-administration-proposes-big-cuts-in-medical-research?ft=nprml&f=520390147","nprRetrievedStory":"1","nprPubDate":"Thu, 16 Mar 2017 15:32:00 -0400","nprStoryDate":"Thu, 16 Mar 2017 10:26:00 -0400","nprLastModifiedDate":"Thu, 16 Mar 2017 15:32:35 -0400","path":"/futureofyou/355752/trump-administration-proposes-big-cuts-in-medical-research","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Biomedical research and public health are among the big losers in the Trump administration's proposed budget.\u003c/p>\n\u003cp>The \u003ca href=\"http://www.npr.org/2017/03/16/520379061/read-president-trumps-budget-blueprint\">proposal\u003c/a> promises:\u003c/p>\n\u003cul>\n\u003cli>A \"major reorganization\" in the National Institutes of Health, which supports most of the nation's research on diseases and treatments. That includes a cut of $5.8 billion, about 20 percent of NIH's $30 billion budget.\u003c/li>\n\u003cli>\"Reform\" of funding for the Centers for Disease and Prevention, which works to prevent, monitor and combat disease outbreaks. The budget mentions a $500 million block grant to states.\u003c/li>\n\u003cli>An additional $500 million for the Department of Health and Human Services to \"expand opioid misuse prevention efforts and to increase access to treatment and recovery services to help Americans who are misusing opioids get the help they need.\"\u003c/li>\n\u003cli>Investment in \"mental health activities that are awarded to high-performing entities and focus on high priority areas, such as suicide prevention, serious mental illness, and children's mental health.\" No specifics are provided.\u003c/li>\n\u003c/ul>\n\u003cp>Funding from the National Institutes of Health flows to more than 2,600 institutions around the country and creates more than 313,000 full- and part-time jobs, according to a \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750411/\">2016 study\u003c/a>. So it's not obvious how slashing billions from the NIH budget, as the Trump administration proposes, will bring more jobs to America.\u003c/p>\n\u003cp>That $5.8 billion cut represents a 20 percent reduction in the NIH budget, which is about $30 billion. The federal government hands out most of this funding rather than spending it on its own employees, but the budget proposal is not clear on how much of the spending cuts target grants to university scientists.\u003c/p>\n\u003cp>Federal research grant money flows primarily to universities, and they in turn spend billions to buy equipment and services from local companies. Economist Bruce Weinberg and colleagues at Ohio State University \u003ca href=\"http://science.sciencemag.org/content/344/6179/41.full\">looked at\u003c/a> what happened to federal research dollars that flowed to nine major Midwestern universities.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In 2012, these nine institutions received about $7 billion for research, more than half of which came from the NIH, the National Science Foundation and other funding agencies. Of that, the universities spent almost $1 billion on goods and services from U.S. vendors and subcontractors, the study found.\u003c/p>\n\u003cp>Of that, 16 percent went to vendors in the university's home county, over 16 percent was spent elsewhere in the state, and the balance was spread to companies across the United States.\u003c/p>\n\u003cp>University researchers buy chemicals and other ingredients needed for experiments and purchase laboratory equipment. There are entire industries devoted to supporting biomedical research.\u003c/p>\n\u003cp>\"We were surprised by how many were small, niche high-technology companies,\" Weinberg and his colleagues wrote.\u003c/p>\n\u003cp>\"Of course, science funding is not primarily a jobs or economic stimulus program,\" they added. After all, research is a long-term investment in knowledge and the driving force for economic growth.\u003c/p>\n\u003cp>The budget proposal doesn't include a specific funding figure for the Centers for Disease Control and Prevention, which had a budget of $7 billion in 2016. But the proposed budget says it \"reforms\" the CDC through a new $500 million block grant that would \"increase state flexibility and focus on the leading public health challenges to each state.\"\u003c/p>\n\u003cp>No additional details are included, but that could mean diverting those funds from the CDC's core budget to provide block grants to individual states.\u003c/p>\n\u003cp>\"We are encouraged to see that state health agency priorities, such as flexible funding to meet state and territorial public health needs and the public health Emergency Fund, are in the President's Budget,\" said Michael Fraser, executive director of the \u003ca href=\"http://www.astho.org/\">Association of State and Territorial Health Officials\u003c/a>, in an email.\u003c/p>\n\u003cp>\"Those are things we really do want to see,\" Fraser continued. \"However, the fact is that support for those priorities comes at what looks like a very significant cost to existing programs. The proposed reductions to HHS may have serious negative impacts on both federal and state responses to public health needs and that leaves many of us extremely concerned.\"\u003c/p>\n\u003cp>The budget also calls for the creation of a new \"Federal Emergency Response Fund\" that would be designed to \"rapidly respond to public health outbreaks,\" such as Zika. This is an idea that has been gaining support recently, especially in the wake of the Ebola outbreak in West Africa and the emergence of Zika as a threat to pregnant women and their babies.\u003c/p>\n\u003cp>President Obama's emergency funding request to respond to Zika got mired in politics in Congress. The budget doesn't specify how big this new fund would be.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>The proposed budget is silent on the National Science Foundation, which provides about $7 billion a year in grants to researchers in many fields.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Trump+Administration+Proposes+Big+Cuts+In+Medical+Research&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/355752/trump-administration-proposes-big-cuts-in-medical-research","authors":["byline_futureofyou_355752"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_80","futureofyou_22","futureofyou_1212"],"featImg":"futureofyou_355753","label":"source_futureofyou_355752"},"futureofyou_93":{"type":"posts","id":"futureofyou_93","meta":{"index":"posts_1591205157","site":"futureofyou","id":"93","score":null,"sort":[1381535490000]},"guestAuthors":[],"slug":"should-every-newborn-undergo-genetic-testing","title":"Should Every Newborn Undergo Genetic Testing?","publishDate":1381535490,"format":"audio","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{"term":54,"site":"futureofyou"},"content":"\u003cp>http://www.kqed.org/.stream/anon/radio/science/2013/10/2013-10-14-science.mp3\u003c/p>\n\u003cp>When a new baby is born, anything seems possible. But we now know that this potential comes with an asterisk. Written into an infant’s DNA are instructions that may make her more vulnerable than other people are to cancer, for instance, or Alzheimer’s disease.\u003c/p>\n\u003cp>So how much of that information should parents be given when their baby is born?\u003c/p>\n\u003cp>The National Institutes of Health has launched a five-year, $25 million effort to explore this question. Researchers at the University of California-San Francisco and three other sites will receive NIH funds to tackle some of the issues that could arise, should genetic testing become routine for each of the roughly four million babies born every year in the United States.\u003c/p>\n\u003caside class=\"pullquote alignright\">Just because we have the technology to tell parents about diseases their children might face decades down the line, does that mean we should use it?\u003c/aside>\n\u003cp>At UCSF, researchers will focus on a relatively straightforward question: Are genetic tests more effective than the standard blood screening tests newborns currently get?\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Barbara Koenig is a UCSF bioethicist. She says when the routine blood test became standard in the 1960s, it seemed like magic.\u003c/p>\n\u003cp>“There are a couple rare conditions -- like PKU and genetic hypothyroidism -- that, if you identified them early, you could do an immediate intervention with the infant and prevent a life of terrible suffering, or mental retardation.”\u003c/p>\n\u003cp>PKU is a rare metabolic disorder that, unless treated with a special diet, can lead to mental retardation. Congenital hypothyroidism, caused by an under-active thyroid, can also lead to developmental delays unless treated early on with medication. So tests like this provide a clear and obvious public health benefit, says Koenig.\u003c/p>\n\u003cp>“Someone comes in and does a little heel stick on the baby, takes the blood. Then you don’t\u003cbr>\nhear about it anymore, unless there’s a positive result.”\u003c/p>\n\u003cp>But these tests aren’t perfect. Sometimes there are false positives. And today, says UCSF geneticist Bob Nussbaum, there’s a technology that may be able to do a much better job: genetic testing.\u003c/p>\n\u003cp>“Could it possibly replace our current system?” Nussbaum says his study is asking. “Does it have added value above what we’re doing, providing information that’s useful and important?”\u003c/p>\n\u003cfigure id=\"attachment_155\" class=\"wp-caption alignleft\" style=\"max-width: 163px\">\u003cimg class=\"size-full wp-image-155\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/03/Nussbaum-163x162.jpg\" alt=\"Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. (Holly Smith)\" width=\"163\" height=\"162\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162.jpg 163w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-75x75.jpg 75w\" sizes=\"(max-width: 163px) 100vw, 163px\">\u003cfigcaption class=\"wp-caption-text\">Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. (Holly Smith)\u003c/figcaption>\u003c/figure>\n\u003cp>Over the next five years, Nussbaum, Koenig and others on the team will study the potential of exome testing, which focuses on the two percent of genes that are used as blueprints for the production of proteins. These tests currently cost researchers about $700 apiece.\u003c/p>\n\u003cp>Working with 1,400 blood samples archived in the state’s Department of Public Health, researchers will see whether exome testing does a better job predicting newborn illnesses than the current biochemical tests do.\u003c/p>\n\u003cp>Meanwhile, a second project will offer genetic testing to families whose children have already been diagnosed with an immune disorder, to see whether the genetic tests shed further light on their conditions.\u003c/p>\n\u003cp>But the implications of these questions can be thorny. Researchers at UCSF and the other sites – Brigham and Women’s Hospital in Boston, Children’s Mercy Hospital in Kansas City, and the University of North Carolina at Chapel Hill – are asking: Just because we have the technology to tell parents about diseases their babies might one day get, does that mean we should use it?\u003c/p>\n\u003cp>Many researchers are ambivalent, at best.\u003c/p>\n\u003cp>“What possible value is there in knowing that piece of information now?” asks UCSF’s Nussbaum.\u003c/p>\n\u003cfigure id=\"attachment_156\" class=\"wp-caption alignleft\" style=\"max-width: 107px\">\u003cimg class=\"size-full wp-image-156\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/03/Koenig-107x162.jpg\" alt=\"UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a “distinctly American bias.” (Courtesy of the Mayo Clinic)\" width=\"107\" height=\"162\">\u003cfigcaption class=\"wp-caption-text\">UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a “distinctly American bias.” (Courtesy of the Mayo Clinic)\u003c/figcaption>\u003c/figure>\n\u003cp>Take, for example, he says, a gene called ApoE, some variants of which indicate an increased risk for Alzheimer’s disease.\u003c/p>\n\u003cp>“I think there’s actually greater harm than good to be telling parents that a child has a three- or four-fold increased risk for a late-onset disorder for which we currently have no therapy.\"\u003c/p>\n\u003cp>As a doctor, this puts Nussbaum in a bind. On the one hand, he knows it can sound patronizing to deprive a parent of medical information about his or her child.\u003c/p>\n\u003cp>On the other hand, this information can alter the course of a child's life in many ways, including changing the way he or she is parented.\u003c/p>\n\u003cp>In fact, there’s a whole body of literature on this phenomenon: it’s called Vulnerable Child Syndrome.\u003c/p>\n\u003cp>Parents of these children, says Nussbaum “are perhaps afraid to institute the same level of discipline. They may treat one of those children differently than the siblings. You’ve introduced a psychological issue.”\u003c/p>\n\u003cp>There’s a term bioethicists often use to describe what these children have lost: “open future.” It refers to a person's right \u003cem>not\u003c/em> to know how his or her genes might impact a life.\u003c/p>\n\u003cp>To underscore this concern, Koenig and Nussbaum point to studies done in Ireland and the United Kingdom on people at risk for Huntington’s disease, a fatal neurodegenerative disorder.\u003c/p>\n\u003cp>When subjects learned that the presence of a specific gene would indicate that they would inescapably come down with the disease, most declined to take the test.\u003c/p>\n\u003caside class=\"pullquote alignright\">Bioethicists use the term “open future\" to describe a child's right \u003cem>not\u003c/em> to know how genes might impact his or her life.\u003c/aside>\n\u003cp>So, the logic goes, if adults often choose not to know what their genes might say about their future, what right do parents, or doctors, have to make that choice for newborns?\u003c/p>\n\u003cp>That's a concern shared by Jonathan Berg, a geneticist at the University of North Carolina School of Medicine, whose NIH funds will explore how best to explain the implications of genetic tests to diverse populations.\u003c/p>\n\u003cp>Berg says he values the choice he has, as an adult, to decide whether to undergo genetic testing -- to know, for example, his ApoE status.\u003c/p>\n\u003cp>“But if you imagine a generation of children whose parents decide that for them, then those children no longer have the right to an open future. They won’t have the ability, as I do, to value the fact that I get to decide that information for myself.”\u003c/p>\n\u003cp>These are not hypothetical concerns, because infant genetic testing is already happening in a limited way, not as a public health venture, but as a commercial one.\u003c/p>\n\u003cp>Catherine Afarian works at a company called 23andMe, based in Mountain View, Califonia. For $100, the company will test for a list of genetic signatures that can provide information about a person’s ancestry and health risks.\u003c/p>\n\u003cp>Afarian bought one for Hudson when he was eight months old.\u003c/p>\n\u003cfigure id=\"attachment_157\" class=\"wp-caption aligncenter\" style=\"max-width: 1538px\">\u003cimg class=\"size-full wp-image-157\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/03/Afarian-Family.jpg\" alt=\"If there’s information out there about her son’s health, Afarian says she wants to have it, even if it’s worrisome. (Jonathan Payne)\" width=\"1538\" height=\"1022\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family.jpg 1538w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-400x266.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-800x532.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-1180x784.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-768x510.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-320x213.jpg 320w\" sizes=\"(max-width: 1538px) 100vw, 1538px\">\u003cfigcaption class=\"wp-caption-text\">If there’s information out there about her son’s health, Afarian says she wants to have it, even if it’s worrisome. (Jonathan Payne)\u003c/figcaption>\u003c/figure>\n\u003cp>She learned that Hudson, like herself, has an increased sensitivity for a blood thinner called Warfarin, which is prescribed to prevent blood clots.\u003c/p>\n\u003cp>According to the test, Hudson is also a “slow metabolizer of caffeine, as am I,” she says.\u003c/p>\n\u003cp>Some more serious things came up, too.\u003c/p>\n\u003cp>According to his 23andMe test, Hudson has an increased risk for Parkinson’s disease. This is also not a surprise, as at least one member of Afarian's family has had Parkinson's. Afarian says having the information about Hudson's risk will help her focus her concerns in the future.\u003c/p>\n\u003cp>“I’m going to pay attention to the studies that come out about Parkinson’s,” she says. And when her family can afford to make some charitable contributions, “I want to put money into Parkinson’s research.\u003c/p>\n\u003cp>“My son is only two and a half. Who knows what kinds of opportunities and treatments are going to be there when he’s 30, 40, 50, right?”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Will a majority of parents feel the way Afarian does? That’s just one of many questions the NIH hopes to answer over the next five years. Even then, it could take much longer to sort out whether society at large will benefit from knowing what’s in our children’s genes.\u003c/p>\n\n","blocks":[],"excerpt":"The NIH has launched a five-year, $25 million dollar effort to explore what may be one of the great ethical dilemmas of the 21st century: Just because we can do genetic testing on infants, should we?","status":"publish","parent":0,"modified":1477283883,"stats":{"hasAudio":true,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":41,"wordCount":1433},"headData":{"title":"Should Every Newborn Undergo Genetic Testing? | KQED","description":"The NIH has launched a five-year, $25 million dollar effort to explore what may be one of the great ethical dilemmas of the 21st century: Just because we can do genetic testing on infants, should we?","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Should Every Newborn Undergo Genetic Testing?","datePublished":"2013-10-11T23:51:30.000Z","dateModified":"2016-10-24T04:38:03.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"93 http://ww2.kqed.org/futureofyou/?p=93","disqusUrl":"https://ww2.kqed.org/futureofyou/2013/10/11/should-every-newborn-undergo-genetic-testing/","disqusTitle":"Should Every Newborn Undergo Genetic Testing?","path":"/futureofyou/93/should-every-newborn-undergo-genetic-testing","audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2013/10/2013-10-14-science.mp3","audioDuration":null,"audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>http://www.kqed.org/.stream/anon/radio/science/2013/10/2013-10-14-science.mp3\u003c/p>\n\u003cp>When a new baby is born, anything seems possible. But we now know that this potential comes with an asterisk. Written into an infant’s DNA are instructions that may make her more vulnerable than other people are to cancer, for instance, or Alzheimer’s disease.\u003c/p>\n\u003cp>So how much of that information should parents be given when their baby is born?\u003c/p>\n\u003cp>The National Institutes of Health has launched a five-year, $25 million effort to explore this question. Researchers at the University of California-San Francisco and three other sites will receive NIH funds to tackle some of the issues that could arise, should genetic testing become routine for each of the roughly four million babies born every year in the United States.\u003c/p>\n\u003caside class=\"pullquote alignright\">Just because we have the technology to tell parents about diseases their children might face decades down the line, does that mean we should use it?\u003c/aside>\n\u003cp>At UCSF, researchers will focus on a relatively straightforward question: Are genetic tests more effective than the standard blood screening tests newborns currently get?\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Barbara Koenig is a UCSF bioethicist. She says when the routine blood test became standard in the 1960s, it seemed like magic.\u003c/p>\n\u003cp>“There are a couple rare conditions -- like PKU and genetic hypothyroidism -- that, if you identified them early, you could do an immediate intervention with the infant and prevent a life of terrible suffering, or mental retardation.”\u003c/p>\n\u003cp>PKU is a rare metabolic disorder that, unless treated with a special diet, can lead to mental retardation. Congenital hypothyroidism, caused by an under-active thyroid, can also lead to developmental delays unless treated early on with medication. So tests like this provide a clear and obvious public health benefit, says Koenig.\u003c/p>\n\u003cp>“Someone comes in and does a little heel stick on the baby, takes the blood. Then you don’t\u003cbr>\nhear about it anymore, unless there’s a positive result.”\u003c/p>\n\u003cp>But these tests aren’t perfect. Sometimes there are false positives. And today, says UCSF geneticist Bob Nussbaum, there’s a technology that may be able to do a much better job: genetic testing.\u003c/p>\n\u003cp>“Could it possibly replace our current system?” Nussbaum says his study is asking. “Does it have added value above what we’re doing, providing information that’s useful and important?”\u003c/p>\n\u003cfigure id=\"attachment_155\" class=\"wp-caption alignleft\" style=\"max-width: 163px\">\u003cimg class=\"size-full wp-image-155\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/03/Nussbaum-163x162.jpg\" alt=\"Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. (Holly Smith)\" width=\"163\" height=\"162\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162.jpg 163w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Nussbaum-163x162-75x75.jpg 75w\" sizes=\"(max-width: 163px) 100vw, 163px\">\u003cfigcaption class=\"wp-caption-text\">Geneticist Robert Nussbaum heads UCSFs $4.5 million newborn screening pilot study. (Holly Smith)\u003c/figcaption>\u003c/figure>\n\u003cp>Over the next five years, Nussbaum, Koenig and others on the team will study the potential of exome testing, which focuses on the two percent of genes that are used as blueprints for the production of proteins. These tests currently cost researchers about $700 apiece.\u003c/p>\n\u003cp>Working with 1,400 blood samples archived in the state’s Department of Public Health, researchers will see whether exome testing does a better job predicting newborn illnesses than the current biochemical tests do.\u003c/p>\n\u003cp>Meanwhile, a second project will offer genetic testing to families whose children have already been diagnosed with an immune disorder, to see whether the genetic tests shed further light on their conditions.\u003c/p>\n\u003cp>But the implications of these questions can be thorny. Researchers at UCSF and the other sites – Brigham and Women’s Hospital in Boston, Children’s Mercy Hospital in Kansas City, and the University of North Carolina at Chapel Hill – are asking: Just because we have the technology to tell parents about diseases their babies might one day get, does that mean we should use it?\u003c/p>\n\u003cp>Many researchers are ambivalent, at best.\u003c/p>\n\u003cp>“What possible value is there in knowing that piece of information now?” asks UCSF’s Nussbaum.\u003c/p>\n\u003cfigure id=\"attachment_156\" class=\"wp-caption alignleft\" style=\"max-width: 107px\">\u003cimg class=\"size-full wp-image-156\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/03/Koenig-107x162.jpg\" alt=\"UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a “distinctly American bias.” (Courtesy of the Mayo Clinic)\" width=\"107\" height=\"162\">\u003cfigcaption class=\"wp-caption-text\">UCSF bioethicist Barbara Koenig calls the desire to have as much information as possible a “distinctly American bias.” (Courtesy of the Mayo Clinic)\u003c/figcaption>\u003c/figure>\n\u003cp>Take, for example, he says, a gene called ApoE, some variants of which indicate an increased risk for Alzheimer’s disease.\u003c/p>\n\u003cp>“I think there’s actually greater harm than good to be telling parents that a child has a three- or four-fold increased risk for a late-onset disorder for which we currently have no therapy.\"\u003c/p>\n\u003cp>As a doctor, this puts Nussbaum in a bind. On the one hand, he knows it can sound patronizing to deprive a parent of medical information about his or her child.\u003c/p>\n\u003cp>On the other hand, this information can alter the course of a child's life in many ways, including changing the way he or she is parented.\u003c/p>\n\u003cp>In fact, there’s a whole body of literature on this phenomenon: it’s called Vulnerable Child Syndrome.\u003c/p>\n\u003cp>Parents of these children, says Nussbaum “are perhaps afraid to institute the same level of discipline. They may treat one of those children differently than the siblings. You’ve introduced a psychological issue.”\u003c/p>\n\u003cp>There’s a term bioethicists often use to describe what these children have lost: “open future.” It refers to a person's right \u003cem>not\u003c/em> to know how his or her genes might impact a life.\u003c/p>\n\u003cp>To underscore this concern, Koenig and Nussbaum point to studies done in Ireland and the United Kingdom on people at risk for Huntington’s disease, a fatal neurodegenerative disorder.\u003c/p>\n\u003cp>When subjects learned that the presence of a specific gene would indicate that they would inescapably come down with the disease, most declined to take the test.\u003c/p>\n\u003caside class=\"pullquote alignright\">Bioethicists use the term “open future\" to describe a child's right \u003cem>not\u003c/em> to know how genes might impact his or her life.\u003c/aside>\n\u003cp>So, the logic goes, if adults often choose not to know what their genes might say about their future, what right do parents, or doctors, have to make that choice for newborns?\u003c/p>\n\u003cp>That's a concern shared by Jonathan Berg, a geneticist at the University of North Carolina School of Medicine, whose NIH funds will explore how best to explain the implications of genetic tests to diverse populations.\u003c/p>\n\u003cp>Berg says he values the choice he has, as an adult, to decide whether to undergo genetic testing -- to know, for example, his ApoE status.\u003c/p>\n\u003cp>“But if you imagine a generation of children whose parents decide that for them, then those children no longer have the right to an open future. They won’t have the ability, as I do, to value the fact that I get to decide that information for myself.”\u003c/p>\n\u003cp>These are not hypothetical concerns, because infant genetic testing is already happening in a limited way, not as a public health venture, but as a commercial one.\u003c/p>\n\u003cp>Catherine Afarian works at a company called 23andMe, based in Mountain View, Califonia. For $100, the company will test for a list of genetic signatures that can provide information about a person’s ancestry and health risks.\u003c/p>\n\u003cp>Afarian bought one for Hudson when he was eight months old.\u003c/p>\n\u003cfigure id=\"attachment_157\" class=\"wp-caption aligncenter\" style=\"max-width: 1538px\">\u003cimg class=\"size-full wp-image-157\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/03/Afarian-Family.jpg\" alt=\"If there’s information out there about her son’s health, Afarian says she wants to have it, even if it’s worrisome. (Jonathan Payne)\" width=\"1538\" height=\"1022\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family.jpg 1538w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-400x266.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-800x532.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-1180x784.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-768x510.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2015/03/Afarian-Family-320x213.jpg 320w\" sizes=\"(max-width: 1538px) 100vw, 1538px\">\u003cfigcaption class=\"wp-caption-text\">If there’s information out there about her son’s health, Afarian says she wants to have it, even if it’s worrisome. (Jonathan Payne)\u003c/figcaption>\u003c/figure>\n\u003cp>She learned that Hudson, like herself, has an increased sensitivity for a blood thinner called Warfarin, which is prescribed to prevent blood clots.\u003c/p>\n\u003cp>According to the test, Hudson is also a “slow metabolizer of caffeine, as am I,” she says.\u003c/p>\n\u003cp>Some more serious things came up, too.\u003c/p>\n\u003cp>According to his 23andMe test, Hudson has an increased risk for Parkinson’s disease. This is also not a surprise, as at least one member of Afarian's family has had Parkinson's. Afarian says having the information about Hudson's risk will help her focus her concerns in the future.\u003c/p>\n\u003cp>“I’m going to pay attention to the studies that come out about Parkinson’s,” she says. And when her family can afford to make some charitable contributions, “I want to put money into Parkinson’s research.\u003c/p>\n\u003cp>“My son is only two and a half. Who knows what kinds of opportunities and treatments are going to be there when he’s 30, 40, 50, right?”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Will a majority of parents feel the way Afarian does? That’s just one of many questions the NIH hopes to answer over the next five years. Even then, it could take much longer to sort out whether society at large will benefit from knowing what’s in our children’s genes.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/93/should-every-newborn-undergo-genetic-testing","authors":["210"],"programs":["futureofyou_54"],"categories":["futureofyou_1064"],"tags":["futureofyou_15","futureofyou_16","futureofyou_17","futureofyou_18","futureofyou_19","futureofyou_20","futureofyou_21","futureofyou_22","futureofyou_23","futureofyou_24"],"featImg":"futureofyou_101","label":"futureofyou_54"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? 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But is this once sleepy suburb ready for them?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/American-Suburb-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/news/series/american-suburb-podcast","meta":{"site":"news","source":"kqed","order":"13"},"link":"/news/series/american-suburb-podcast/","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=1287748328","tuneIn":"https://tunein.com/radio/American-Suburb-p1086805/","rss":"https://ww2.kqed.org/news/series/american-suburb-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkMzMDExODgxNjA5"}},"baycurious":{"id":"baycurious","title":"Bay Curious","tagline":"Exploring the Bay Area, one question at a time","info":"KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"id":"code-switch-life-kit","title":"Code Switch / Life Kit","info":"\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"id":"commonwealth-club","title":"Commonwealth Club of California Podcast","info":"The Commonwealth Club of California is the nation's oldest and largest public affairs forum. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. This podcast feed is usually updated twice a week and is always un-edited.","airtime":"THU 10pm, FRI 1am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Commonwealth-Club-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.commonwealthclub.org/podcasts","meta":{"site":"news","source":"Commonwealth Club of California"},"link":"/radio/program/commonwealth-club","subscribe":{"apple":"https://itunes.apple.com/us/podcast/commonwealth-club-of-california-podcast/id976334034?mt=2","google":"https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw","tuneIn":"https://tunein.com/radio/Commonwealth-Club-of-California-p1060/"}},"considerthis":{"id":"considerthis","title":"Consider This","tagline":"Make sense of the day","info":"Make sense of the day. Every weekday afternoon, Consider This helps you consider the major stories of the day in less than 15 minutes, featuring the reporting and storytelling resources of NPR. 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You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. 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