<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>0864-3466</journal-id>
<journal-title><![CDATA[Revista Cubana de Salud Pública]]></journal-title>
<abbrev-journal-title><![CDATA[Rev Cubana Salud Pública]]></abbrev-journal-title>
<issn>0864-3466</issn>
<publisher>
<publisher-name><![CDATA[Editorial Ciencias Médicas]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S0864-34662018000200360</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[Normas éticas para la realización de pruebas predictivas en los servicios de genética médica de Cuba]]></article-title>
<article-title xml:lang="en"><![CDATA[Ethical norms for the execution of predictive tests in the medical genetics´ services in Cuba]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Rojas Betancourt]]></surname>
<given-names><![CDATA[Iris Andrea]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Marcheco Teruel]]></surname>
<given-names><![CDATA[Beatriz]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Centro Nacional de Genética Médica  ]]></institution>
<addr-line><![CDATA[La Habana ]]></addr-line>
<country>Cuba</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>06</month>
<year>2018</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>06</month>
<year>2018</year>
</pub-date>
<volume>44</volume>
<numero>2</numero>
<fpage>360</fpage>
<lpage>373</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://scielo.sld.cu/scielo.php?script=sci_arttext&amp;pid=S0864-34662018000200360&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.sld.cu/scielo.php?script=sci_abstract&amp;pid=S0864-34662018000200360&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.sld.cu/scielo.php?script=sci_pdf&amp;pid=S0864-34662018000200360&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[RESUMEN  Introducción:  Las nuevas tecnologías disponibles en el campo de la genética humana y médica pueden ser utilizadas, cada vez más, con fines médicos preventivos. Existe también el riesgo de su uso indebido que favorezca la discriminación y la eutanasia selectiva y minimice el papel de los condicionantes sociales en la salud de las poblaciones.  Objetivo:  Establecer normas éticas para garantizar que las pruebas presintomáticas en Cuba se realicen conforme a los principios éticos de respeto a la autonomía, justicia, beneficencia y no maleficencia.  Métodos:  Estas normas se elaboraron a partir de una propuesta discutida y consensuada en talleres nacionales con la participación de genetistas clínicos de todo el país y aprobadas por el Comité de Ética del Centro Nacional de Genética Médica y el Ministerio de Salud Pública.  Resultados:  Las normas aprobadas consideraron aspectos esenciales como el conocimiento sobre el alcance de la información que la prueba revelará y sus implicaciones a nivel personal y familiar, el consentimiento informado para su realización, las condiciones en que se realiza y la seguridad de sus resultados, las obligaciones médicas antes, durante y después de la realización de la prueba y lo concerniente a la privacidad y confidencialidad de la información.  Conclusiones:  La generalización y cumplimiento de las normas aprobadas asegura la protección a individuos y familias vulnerables, contribuye a mejorar su atención médica y a aminorar el impacto que sobre su salud, su reproducción y su vida en general, tienen las severas enfermedades para las que están en riesgo o padecen.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[ABSTRACT  Introduction:  New technologies available in the field of human and medical genetics can increasingly be used for preventive medical purposes. There is also the risk of misuse that favors discrimination and selective euthanasia, and that minimizes the role of social determinants in the health of the populations.  Objectives:  To establish ethical norms to ensure that presymptomatic tests in Cuba are carried out in accordance with the principles of respect for autonomy, justice, beneficence and non-malice.  Methods:  These norms were elaborated from a proposal discussed and agreed upon in national workshops with the participation of clinical geneticists from all over the country and approved by the Ethics Committee of the National Center of Medical Genetics and the Ministry of Public Health.  Results:  The approved norms considered essential aspects such as: the knowledge about the scope of information that the test will reveal and its implications on a personal and family level, informed consent for its implementation, the conditions under which it is performed, and the safety of its results; medical obligations before, during and after the performance of the test; and all concerning to the privacy and confidentiality of the information.  Conclusions:  The generalization and compliance of these ethical norms ensure the protection of vulnerable individuals and families, contributes to improving their medical care and to reducing the impact on their health, their reproduction and life in general terms of the severe diseases they are at risk or suffering from.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[Pruebas predictivas]]></kwd>
<kwd lng="es"><![CDATA[asesoramiento genético]]></kwd>
<kwd lng="es"><![CDATA[normas éticas]]></kwd>
<kwd lng="es"><![CDATA[servicios de genética médica]]></kwd>
<kwd lng="es"><![CDATA[Cuba]]></kwd>
<kwd lng="en"><![CDATA[Predictive testing]]></kwd>
<kwd lng="en"><![CDATA[genetic counseling]]></kwd>
<kwd lng="en"><![CDATA[ethical norms]]></kwd>
<kwd lng="en"><![CDATA[medical genetics services]]></kwd>
<kwd lng="en"><![CDATA[Cuba]]></kwd>
</kwd-group>
</article-meta>
</front><back>
<ref-list>
<ref id="B1">
<label>1</label><nlm-citation citation-type="book">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Knoppers]]></surname>
<given-names><![CDATA[BM]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Genetic Information. Use and Abuse.]]></article-title>
<person-group person-group-type="editor">
<name>
<surname><![CDATA[Bryant]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
<name>
<surname><![CDATA[Baggott la Velle]]></surname>
<given-names><![CDATA[L]]></given-names>
</name>
<name>
<surname><![CDATA[Searle]]></surname>
<given-names><![CDATA[J]]></given-names>
</name>
</person-group>
<source><![CDATA[Bioethics for Scientists]]></source>
<year>2002</year>
<publisher-loc><![CDATA[New York ]]></publisher-loc>
<publisher-name><![CDATA[John Wiley &amp; Sons Ltd]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B2">
<label>2</label><nlm-citation citation-type="">
<source><![CDATA[Código de Nuremberg]]></source>
<year>1947</year>
</nlm-citation>
</ref>
<ref id="B3">
<label>3</label><nlm-citation citation-type="">
<source><![CDATA[Declaración de Helsinki, 1964-2008]]></source>
<year>2008</year>
</nlm-citation>
</ref>
<ref id="B4">
<label>4</label><nlm-citation citation-type="">
<source><![CDATA[Informe Belmont]]></source>
<year>1979</year>
</nlm-citation>
</ref>
<ref id="B5">
<label>5</label><nlm-citation citation-type="book">
<source><![CDATA[Normas del CIOMS, 1982-2002]]></source>
<year>2002</year>
<publisher-loc><![CDATA[Ginebra ]]></publisher-loc>
<publisher-name><![CDATA[CCIOMS]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B6">
<label>6</label><nlm-citation citation-type="book">
<source><![CDATA[WHO´s Proposed International Guidelines on Ethical Issues in Medical Genetics and Genetic Services]]></source>
<year>1997</year>
<publisher-loc><![CDATA[Geneva ]]></publisher-loc>
<publisher-name><![CDATA[WHO]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B7">
<label>7</label><nlm-citation citation-type="book">
<source><![CDATA[Declaración Universal sobre el Genoma Humano y los Derechos Humanos]]></source>
<year>1997</year>
<publisher-loc><![CDATA[París ]]></publisher-loc>
<publisher-name><![CDATA[UNESCO]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B8">
<label>8</label><nlm-citation citation-type="book">
<source><![CDATA[Declaración Internacional sobre los datos genéticos humanos]]></source>
<year>2003</year>
<publisher-loc><![CDATA[París ]]></publisher-loc>
<publisher-name><![CDATA[UNESCO]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B9">
<label>9</label><nlm-citation citation-type="book">
<collab>Declaración Universal sobre Bioética y Derechos Humanos</collab>
<source><![CDATA[Comunicado de Prensa N° 2005-127]]></source>
<year>2005</year>
<publisher-loc><![CDATA[París ]]></publisher-loc>
<publisher-name><![CDATA[UNESCOPRENSA]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B10">
<label>10</label><nlm-citation citation-type="journal">
<collab>International Huntington Association and the World Federation of Neurology ResearchGroup on Huntington&amp;apos;s chorea</collab>
<article-title xml:lang=""><![CDATA[Guidelines for the molecular genetics predictive test in Huntington&amp;apos;s disease]]></article-title>
<source><![CDATA[J Med Genet]]></source>
<year>1994</year>
<volume>31</volume>
<numero>7</numero>
<issue>7</issue>
<page-range>555-9</page-range></nlm-citation>
</ref>
<ref id="B11">
<label>11</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Terrenoire]]></surname>
<given-names><![CDATA[G]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Huntington&amp;apos;s disease and the ethics of genetic prediction]]></article-title>
<source><![CDATA[J Med Ethics]]></source>
<year>1992</year>
<volume>18</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>79-85</page-range></nlm-citation>
</ref>
<ref id="B12">
<label>12</label><nlm-citation citation-type="journal">
<collab>World Federation of Neurology: Research Committee. Research Group on Huntington&amp;apos;s chorea</collab>
<article-title xml:lang=""><![CDATA[Ethical issues policy statement on Huntington&amp;apos;s disease molecular genetics predictive test]]></article-title>
<source><![CDATA[J Neurol Sci]]></source>
<year>1989</year>
<volume>94</volume>
<numero>1-3</numero>
<issue>1-3</issue>
<page-range>327-32</page-range></nlm-citation>
</ref>
<ref id="B13">
<label>13</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Cannella]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Simonelli]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[D&amp;apos;alessio]]></surname>
<given-names><![CDATA[C]]></given-names>
</name>
<name>
<surname><![CDATA[Pierelli]]></surname>
<given-names><![CDATA[F]]></given-names>
</name>
<name>
<surname><![CDATA[Ruggieri]]></surname>
<given-names><![CDATA[S]]></given-names>
</name>
<name>
<surname><![CDATA[Squitieri]]></surname>
<given-names><![CDATA[F]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Presymptomatic tests in Huntington&amp;apos;s disease and dominant ataxias]]></article-title>
<source><![CDATA[J Neurol Sci]]></source>
<year>2001</year>
<volume>22</volume>
<numero>1</numero>
<issue>1</issue>
<page-range>55-6</page-range></nlm-citation>
</ref>
<ref id="B14">
<label>14</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Decruyenaere]]></surname>
<given-names><![CDATA[M]]></given-names>
</name>
<name>
<surname><![CDATA[Evers-Kiebooms]]></surname>
<given-names><![CDATA[G]]></given-names>
</name>
<name>
<surname><![CDATA[Boogaerts]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
<name>
<surname><![CDATA[Cassiman]]></surname>
<given-names><![CDATA[JJ]]></given-names>
</name>
<name>
<surname><![CDATA[Cloostermans]]></surname>
<given-names><![CDATA[T]]></given-names>
</name>
<name>
<surname><![CDATA[Demyttenaere]]></surname>
<given-names><![CDATA[K]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Psychological functioning before predictive testing for Huntington&amp;apos;s disease The role of the parental disease, risk perception, and subjective proximity of the disease]]></article-title>
<source><![CDATA[J Med Genet]]></source>
<year>1999</year>
<volume>36</volume>
<numero>12</numero>
<issue>12</issue>
<page-range>897-905</page-range></nlm-citation>
</ref>
<ref id="B15">
<label>15</label><nlm-citation citation-type="journal">
<collab>Skirton H1.Goldsmith L.Jackson L.Tibben A Quality in genetic counseling for presymptomatic testing--clinical guidelines for practice across the range of genetic conditions</collab>
<article-title xml:lang=""><![CDATA[Eur J Hum]]></article-title>
<source><![CDATA[Genet]]></source>
<year>2013</year>
<volume>21</volume>
<numero>3</numero>
<issue>3</issue>
<page-range>256-60</page-range></nlm-citation>
</ref>
<ref id="B16">
<label>16</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Lilani]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Ethical issues and policy analysis for genetic testing Huntington&amp;apos;s disease as a paradigm for diseases with a late onset]]></article-title>
<source><![CDATA[Hum Reprod Genet Ethics]]></source>
<year>2005</year>
<volume>11</volume>
<numero>2</numero>
<issue>2</issue>
<page-range>28-34</page-range></nlm-citation>
</ref>
<ref id="B17">
<label>17</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Marcheco]]></surname>
<given-names><![CDATA[B]]></given-names>
</name>
<name>
<surname><![CDATA[Lantigua]]></surname>
<given-names><![CDATA[A]]></given-names>
</name>
<name>
<surname><![CDATA[Rojas]]></surname>
<given-names><![CDATA[I]]></given-names>
</name>
<name>
<surname><![CDATA[Benítez]]></surname>
<given-names><![CDATA[Y]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[Genética Médica en Cuba: sus resultados e impacto en el cuidado de la Salud Materno Infantil en 35 años (1980-2014). Premio de la Academia de Ciencias de Cuba; 2015]]></article-title>
<source><![CDATA[Rev Anales Academia de Ciencias de Cuba]]></source>
<year>2016</year>
<volume>6</volume>
<numero>3</numero>
<issue>3</issue>
</nlm-citation>
</ref>
<ref id="B18">
<label>18</label><nlm-citation citation-type="journal">
<person-group person-group-type="author">
<name>
<surname><![CDATA[Marcheco]]></surname>
<given-names><![CDATA[B]]></given-names>
</name>
</person-group>
<article-title xml:lang=""><![CDATA[El Programa Nacional de Diagnóstico, Manejo y Prevención de Enfermedades Genéticas y Defectos Congénitos de Cuba: 1981-2009]]></article-title>
<source><![CDATA[Rev Cubana Genet Comunit]]></source>
<year>2009</year>
<volume>3</volume>
<numero>2 y 3</numero>
<issue>2 y 3</issue>
<page-range>167-84</page-range></nlm-citation>
</ref>
<ref id="B19">
<label>19</label><nlm-citation citation-type="book">
<source><![CDATA[Instrucción VADI No. 55, sobre investigaciones con seres humanos]]></source>
<year>2011</year>
<publisher-loc><![CDATA[La Habana ]]></publisher-loc>
<publisher-name><![CDATA[Ministerio de Salud Pública]]></publisher-name>
</nlm-citation>
</ref>
<ref id="B20">
<label>20</label><nlm-citation citation-type="book">
<source><![CDATA[Resolución Ministerial No. 219 de 2007: Normas Éticas para la protección de la información genética de ciudadanos cubanos que participan en investigaciones o se les realizan diagnósticos asistenciales en las que se accede a datos relativos al individuo y a sus familiares, así como a material biológico a partir del cual puede obtenerse ADN]]></source>
<year>2007</year>
<publisher-loc><![CDATA[La Habana ]]></publisher-loc>
<publisher-name><![CDATA[Gaceta Oficial Extraordinaria de la República de Cuba]]></publisher-name>
</nlm-citation>
</ref>
</ref-list>
</back>
</article>
