{"id":29083,"date":"2025-06-05T09:00:08","date_gmt":"2025-06-05T09:00:08","guid":{"rendered":"http:\/\/medexperts.pro\/?p=29083"},"modified":"2025-06-05T12:23:48","modified_gmt":"2025-06-05T12:23:48","slug":"should-we-test-babies-for-incurable-diseases-2","status":"publish","type":"post","link":"https:\/\/medexperts.pro\/?p=29083","title":{"rendered":"Should We Test Babies for Incurable Diseases?"},"content":{"rendered":"
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In every postpartum hospital unit across the country, 1-day-old babies undergo the same ritual: A nurse pricks the newborn\u2019s heel and stamps tiny drops of blood onto a paper filter, which is then sent off for a standard screening panel.<\/p>\n

Today, that panel<\/a> checks for unusual bio-markers that may indicate a rare but treatable disease<\/a> like sickle cell anemia or cystic fibrosis. But what if that same dried blood spot could tell you about the baby\u2019s risk of developing certain conditions later in life \u2014 some with no method of prevention or cure?<\/p>\n

What if that heel prick could tell you that the baby was almost certainly going to be diagnosed with autism by the time they turned 5? Or that the child would be more likely to develop breast cancer as an adult?<\/p>\n

Would you want to know? Would she?<\/p>\n

These questions are no longer hypothetical. Tens of thousands of parents have sought such insights by enrolling their newborns in research projects<\/a> that examine the baby\u2019s genome \u2014 the full blueprint for her growing body. As the cost of sequencing plummets, the practice of analyzing hundreds of genes in healthy babies is quietly on the rise, ushering in new questions about where to draw the boundaries of knowledge \u2014 and who should get to decide.<\/p>\n<\/div>\n<\/div>\n

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Scientifically speaking, the possibilities are almost endless. Since virtually every disease has some basis in our genes, the full genome \u2014 with three billion base pairs, coding some 20,000 genes \u2014 contains a wealth of data to be mined for lifesaving intel and gut-wrenching secrets.<\/p>\n

But the experts are divided. Some say that revealing a risk of an incurable illness will only put parents in distress, bombarding them with despairing predictions for their young child\u2019s life. Others believe any data about diseases that arise in adulthood, like breast or colon cancer, must be excluded, since they violate that future adult\u2019s privacy and autonomy \u2014 in other words, the right not<\/em> to know.<\/p>\n

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In every postpartum hospital unit across the country, 1-day-old babies undergo the same ritual: A nurse pricks the newborn\u2019s heel and stamps tiny drops of blood onto a paper filter, which is then sent off for a standard screening panel.Today, that panel checks for unusual bio-markers that may indicate a rare but treatable disease like sickle cell anemia or cystic fibrosis. But what if that same dried blood spot could tell you about the baby\u2019s risk of developing certain conditions later in life \u2014 some with no method of prevention or cure?What if that heel prick could tell you that the baby was almost certainly going to be diagnosed with autism by the time they turned 5? Or that the child would be more likely to develop breast cancer as an adult?Would you want to know? Would she?These questions are no longer hypothetical. Tens of thousands of parents have sought such insights by enrolling their newborns in research projects that examine the baby\u2019s genome \u2014 the full blueprint for her growing body. As the cost of sequencing plummets, the practice of analyzing hundreds of genes in healthy babies is quietly on the rise, ushering in new questions about where to draw the boundaries of knowledge \u2014 and who should get to decide.Scientifically speaking, the possibilities are almost endless. Since virtually every disease has some basis in our genes, the full genome \u2014 with three billion base pairs, coding some 20,000 genes \u2014 contains a wealth of data to be mined for lifesaving intel and gut-wrenching secrets.But the experts are divided. Some say that revealing a risk of an incurable illness will only put parents in distress, bombarding them with despairing predictions for their young child\u2019s life. Others believe any data about diseases that arise in adulthood, like breast or colon cancer, must be excluded, since they violate that future adult\u2019s privacy and autonomy \u2014 in other words, the right not to know.We are having trouble retrieving the article content.Please enable JavaScript in your browser settings.Thank you for your patience while we verify access. If you are in Reader mode please exit and\u00a0log into\u00a0your Times account, or\u00a0subscribe\u00a0for all of The Times.Thank you for your patience while we verify access.Already a subscriber?\u00a0Log in.Want all of The Times?\u00a0Subscribe.<\/p>\n","protected":false},"author":1,"featured_media":29074,"comment_status":"close","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[33],"tags":[],"class_list":["post-29083","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health"],"_links":{"self":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts\/29083","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=29083"}],"version-history":[{"count":2,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts\/29083\/revisions"}],"predecessor-version":[{"id":29085,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/posts\/29083\/revisions\/29085"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=\/wp\/v2\/media\/29074"}],"wp:attachment":[{"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=29083"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=29083"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medexperts.pro\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=29083"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}