{"id":4698,"date":"2019-06-04T10:06:33","date_gmt":"2019-06-04T17:06:33","guid":{"rendered":"https:\/\/specialneedsresourcefoundationofsandiego.com\/?p=4698"},"modified":"2019-06-04T10:06:33","modified_gmt":"2019-06-04T17:06:33","slug":"benefits-risks-and-limitations-of-genetic-testing","status":"publish","type":"post","link":"https:\/\/specialneedsresourcefoundationofsandiego.com\/benefits-risks-and-limitations-of-genetic-testing\/","title":{"rendered":"Benefits, Risks and Limitations of Genetic Testing"},"content":{"rendered":"\n<p>People consider genetic testing for many reasons, such as having a child with special needs, having a family history of a disorder, planning for pregnancy or simple curiosity. Here is important information to consider if your family is considering genetic testing. <\/p>\n\n\n<p><strong>BENEFITS of Genetic Testing<\/strong><\/p>\n\n\n<p>A genetic diagnosis can help put\npieces of a puzzle together for a family. Genetic diagnoses are made through\ndiagnostic testing or genetic testing (or both) by a medical geneticist or\nother genetics expert. A genetic diagnosis may:<\/p>\n\n\n<ul class=\"wp-block-list\"><li>Help doctors take better care of a child with special needs.<\/li><li>Provide a name for a condition and answers for a family.<\/li><li>Guide a family to community resources geared to a specific genetic\n     condition. <\/li><li>Connect a family to other parents of children with the same\n     diagnosis. <\/li><li>Provide the opportunity to join clinical trials on a specific\n     syndrome.<\/li><\/ul>\n\n\n<p>Parents of children with genetic\nsyndromes often become experts on that syndrome; some parent social media\ngroups have led to the development of foundations for research.<\/p>\n\n\n<p><strong>LIMITATIONS of Genetic Testing<\/strong><\/p>\n\n\n<ul class=\"wp-block-list\"><li>Genetic testing does not always provide a diagnosis or an\nanswer.<\/li><li>There are different types of diagnostic genetic tests. Working\nwith a genetics expert ensures that the right test is ordered and administered.<\/li><li>There may be no direct benefit to a child, even if a genetic\ndiagnosis is made.<\/li><\/ul>\n\n\n<p><strong>RISKS Associated with Genetic Testing<\/strong><\/p>\n\n\n<p>There is a risk for genetic discrimination with all genetic tests. Currently there is a federal law called GINA (Genetic Information Nondiscrimination Act), which prevents health insurers, group health plans and employers from discriminating on the basis of genetic test results. However, this protection does not extend to long-term care, life or disability insurance. It also does not apply to individuals who are in the military. To find out more about GINA, visit <a href=\"http:\/\/www.genome.gov\/genetics-glossary\/Genetic-Information-Nondiscrimination-Act\">www.genome.gov\/genetics-glossary\/Genetic-Information-Nondiscrimination-Act<\/a><\/p>\n\n\n<p>Genetic\ntesting may reveal information that can be unexpected or upsetting, such as\nbiologic relationships not being as stated or recognition that a family member\nhas a genetic disorder. <\/p>\n\n\n<p><strong>Seek a Professional<\/strong><\/p>\n\n\n<p>Consultation with a medical\ngeneticist or genetic counselor is recommended if you\u2019re considering genetic\ntesting, so that risks, benefits and limitations can be thoroughly reviewed. A\ngenetic professional will record a thorough family history to assess whether or\nnot an individual is at increased risk for a genetic condition. The goal is to ensure\nthat people who choose to have genetic testing do so with informed consent and\nthe correct genetic test is ordered. In some cases, a parent or individual may\ndecline to have genetic testing done due to concerns about genetic discrimination\nand privacy or the potential for psychological harm.<\/p>\n\n\n<p><strong>Direct-to-Consumer (DTC) Testing<\/strong><\/p>\n\n\n<p>Direct-to-consumer genetic tests\n(DTC), such as 23andMe, allow consumers to \u201corder\u201d genetic testing without\nguidance of a medical professional. These are not diagnostic tests, so results\nfrom them should not guide medical decision-making. If something runs in your\nfamily, see your doctor, who may provide a referral to a genetic specialist for\nappropriate risk assessment and diagnostic testing. If you decide to send in a\nsample, read information provided by the company carefully and ask these questions:<\/p>\n\n\n<ul class=\"wp-block-list\"><li>What does the company do with my\ngenetic information? <\/li><li>Will my information be shared with\nthird parties?<\/li><li>Will the company protect my\ngenetic privacy? <\/li><li>How does the company secure the\ninformation collected from me?<\/li><li>Who will help me interpret the\nresults (genetic tests do not always provide a \u201cyes\u201d or \u201cno\u201d answer for risk of\ndeveloping a genetic disease)? <\/li><li>What do the results really mean\nfor my health? Do not make decisions based on incomplete, inaccurate or\nmisunderstood information.<\/li><\/ul>\n\n\n<p><strong>Resources<\/strong><\/p>\n\n\n<p>Genetic counseling is recommended\nbefore and after having genetic testing. These websites can help find local genetic\nservices: <\/p>\n\n\n<p>National Society of Genetic Counselors (NSGC)<br \/> <strong><a href=\"http:\/\/www.nsgc.org\/findageneticcounselor\">www.nsgc.org\/findageneticcounselor<\/a><\/strong> <\/p>\n\n\n<p>American College of Medical Genetics (ACMG)<br \/> <strong><a href=\"http:\/\/www.acmg.net\">www.acmg.net<\/a><\/strong><\/p>\n\n\n<p><em>Lisa Salz, MS, LCGC is a genetic counselor at Rady Children\u2019s\nInstitute for Genomic Medicine.<\/em><\/p>\n\n\n<p>To\nread the full article, including an account of how genetic testing helped one\nfamily diagnose their baby with Kabuki syndrome after months of confusion and\nfrustration, pick up the 2019 issue of <em>Flourishing\nFamilies<\/em>. <\/p>\n","protected":false},"excerpt":{"rendered":"<p>People consider genetic testing for many reasons, such as having a child with special needs, having a family history of a disorder, planning for pregnancy or simple curiosity. Here is important information to consider if your family is considering genetic testing. BENEFITS of Genetic Testing A genetic diagnosis can help put pieces of a puzzle [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":4707,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"categories":[231,4],"tags":[],"class_list":{"0":"post-4698","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-general-health","8":"category-general-info","9":"entry"},"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/posts\/4698","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/comments?post=4698"}],"version-history":[{"count":0,"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/posts\/4698\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/media\/4707"}],"wp:attachment":[{"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/media?parent=4698"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/categories?post=4698"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/specialneedsresourcefoundationofsandiego.com\/wp-json\/wp\/v2\/tags?post=4698"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}