<?xml version="1.0" encoding="utf-8"?>
<export-example>
  <doc>
    <id>2953</id>
    <completedYear/>
    <publishedYear>2019</publishedYear>
    <thesisYearAccepted/>
    <language>deu</language>
    <pageFirst>253</pageFirst>
    <pageLast>269</pageLast>
    <pageNumber/>
    <edition/>
    <issue/>
    <volume/>
    <type>bookpart</type>
    <publisherName>mentis Verlag GmbH</publisherName>
    <publisherPlace>Paderborn</publisherPlace>
    <creatingCorporation/>
    <contributingCorporation/>
    <belongsToBibliography>0</belongsToBibliography>
    <completedDate>--</completedDate>
    <publishedDate>--</publishedDate>
    <thesisDateAccepted>--</thesisDateAccepted>
    <title language="deu">Empfehlungen zum anwendungspraktischen Umgang mit dem »Recht auf Nichtwissen« : Ergebnisse einer rechtsethischen Grundlagenanalyse auf erfahrungswissenschaftlicher Basis in den Anwendungsfeldern von Humangenetik und Psychiatrie</title>
    <abstract language="deu">BMBF-Projektgruppe »Recht auf Nichtwissen": Projektleitung: Prof. Dr. iur. Gunnar Duttge; Co-Projektbeteiligte: Prof. Dr. med. Dr. h. c. Wolf-gang Engel und Prof. Dr. Barbara Zoll (Humangenetik); Prof. Dr. med. Thomas Schulze (Psych-iatrische Genetik); Prof. Dr. med. Wolfgang Poser (Psychiatrie); Prof. Dr. phil. Christian Lenk(Medizinethik); Koordinatorin: Dipl.-Jur. Alexandra K. Weber, MLE. Projektmitarbeiter: LauraFlatau, M.Sc, Debora Frommeld, M.A., Dipl.-Jur. Laila Houri, Dr. rer. nat. Dipl.-Psych. MarkusReitt, Mateja Smogavec, Dipl.-Jur. Xenia Tukuser. Projekthomepage: http://www . recht - auf -nichtwissen.uni-goettingen.de/</abstract>
    <parentTitle language="deu">Das sogenannte Recht auf Nichtwissen : Normatives Fundament und anwendungspraktische Geltungskraft</parentTitle>
    <identifier type="isbn">9783957437792</identifier>
    <identifier type="doi">10.30965/9783957437792_018</identifier>
    <enrichment key="opus.import.date">2022-02-18T18:44:39+00:00</enrichment>
    <enrichment key="opus.source">sword</enrichment>
    <enrichment key="opus.import.user">importuser</enrichment>
    <licence>Keine Lizenz - Es gilt das deutsche Urheberrecht: § 53 UrhG</licence>
    <author>Gunnar Duttge</author>
    <author>Wolfgang Engel</author>
    <author>Barbara Zoll</author>
    <author>Thomas Schulze</author>
    <author>Wolfgang Poser</author>
    <author>Christian Lenk</author>
    <author>Alexandra K. Weber</author>
    <author>Laura Flatau</author>
    <author>Debora Frommeld</author>
    <author>Leila Houri</author>
    <author>Markus Reitt</author>
    <author>Mateja Smogavec</author>
    <author>Xenia Tukuser</author>
    <collection role="institutes" number="FakSoz">Fakultät Sozial- und Gesundheitswissenschaften</collection>
    <collection role="othforschungsschwerpunkt" number="16314">Lebenswissenschaften und Ethik</collection>
  </doc>
  <doc>
    <id>2641</id>
    <completedYear/>
    <publishedYear>2019</publishedYear>
    <thesisYearAccepted/>
    <language>eng</language>
    <pageFirst>576</pageFirst>
    <pageLast>588</pageLast>
    <pageNumber/>
    <edition/>
    <issue>8</issue>
    <volume>180</volume>
    <type>article</type>
    <publisherName>Wiley</publisherName>
    <publisherPlace/>
    <creatingCorporation/>
    <contributingCorporation/>
    <belongsToBibliography>0</belongsToBibliography>
    <completedDate>--</completedDate>
    <publishedDate>--</publishedDate>
    <thesisDateAccepted>--</thesisDateAccepted>
    <title language="eng">A look into the future? Patients' and health care staff's perception and evaluation of genetic information and the right not to know</title>
    <abstract language="eng">The progress of medical genetics leads to a significant increase in genetic knowledge and a vast expansion of genetic diagnostics. However, it is still unknown how these changes will be integrated into medical practice and how they will change patients' and healthy persons' perception and evaluation of genetic diagnoses and genetic knowledge. Therefore, we carried out a comprehensive questionnaire survey with more than 500 patients, clients seeking genetic counseling, health care staff, and healthy persons (N = 523). The questionnaire survey covered detailed questions on the value of genetic diagnoses for the different groups of study participants, the right to know or not to know genetic diagnoses, possible differences between genetic and other medical diagnoses, and the practical use and implications of genetic knowledge with a special focus on hereditary neuropsychiatric diseases. A huge majority of the participants (90.7%) stated to have a right to learn every aspect of her or his genetic make-up. Similarly, study participants showed high interest (81.8%) in incidental health care findings-independent of whether the diseases are treatable or not. One can derive from the data outcome that study participants did not follow the implications of a "genetic exceptionalism" and often considered genetic findings as equivalent in relation to other medical diagnoses.</abstract>
    <parentTitle language="eng">American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics</parentTitle>
    <identifier type="doi">10.1002/ajmg.b.32751</identifier>
    <enrichment key="opus.import.date">2022-01-28T13:58:12+00:00</enrichment>
    <enrichment key="opus.source">sword</enrichment>
    <enrichment key="opus.import.user">importuser</enrichment>
    <enrichment key="BegutachtungStatus">peer-reviewed</enrichment>
    <licence>Keine Lizenz - Es gilt das deutsche Urheberrecht: § 53 UrhG</licence>
    <author>Christian Lenk</author>
    <author>Gunnar Duttge</author>
    <author>Laura Flatau</author>
    <author>Debora Frommeld</author>
    <author>Wolfgang Poser</author>
    <author>Markus Reitt</author>
    <author>Thomas Schulze</author>
    <author>Alexandra Weber</author>
    <author>Barbara Zoll</author>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Attitude of Health Personnel</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Female</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Genetic Counseling/methods</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Genetic Testing/ethics</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Health Knowledge, Attitudes, Practice</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Humans</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Incidental Findings</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Male</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Middle Aged</value>
    </subject>
    <subject>
      <language>eng</language>
      <type>uncontrolled</type>
      <value>Surveys and Questionnaires</value>
    </subject>
    <collection role="institutes" number="FakSoz">Fakultät Sozial- und Gesundheitswissenschaften</collection>
    <collection role="othforschungsschwerpunkt" number="16314">Lebenswissenschaften und Ethik</collection>
    <collection role="institutes" number="">Institut für Sozialforschung und Technikfolgenabschätzung (IST)</collection>
  </doc>
</export-example>
