Predictive genetic testing for neurodegenerative conditions: how should conflicting interests within families be managed?

Predictive genetic testing for a neurodegenerative condition in one individual in a family may have implications for other family members, in that it can reveal their genetic status. Herein a complex clinical case is explored where the testing wish of one family member was in direct conflict to that...

Ausführliche Beschreibung

Bibliographische Detailangaben
Veröffentlicht in:Journal of Medical Ethics. in. - Society for the Study of Medical Ethics. - 42(2016), 10, Seite 640-642
1. Verfasser: Stark, Zornitza (VerfasserIn)
Weitere Verfasser: Wallace, Jane, Gillam, Lynn, Burgess, Matthew, Delatycki, Martin B
Format: Online-Aufsatz
Sprache:English
Veröffentlicht: 2016
Zugriff auf das übergeordnete Werk:Journal of Medical Ethics. in
Schlagworte:Behavioral sciences Biological sciences Health sciences Social sciences
LEADER 01000caa a22002652 4500
001 JST140175377
003 DE-627
005 20240613015348.0
007 cr uuu---uuuuu
008 240126s2016 xx |||||o 00| ||eng c
035 |a (DE-627)JST140175377 
035 |a (JST)44014444 
040 |a DE-627  |b ger  |c DE-627  |e rakwb 
041 |a eng 
100 1 |a Stark, Zornitza  |e verfasserin  |4 aut 
245 1 0 |a Predictive genetic testing for neurodegenerative conditions: how should conflicting interests within families be managed? 
264 1 |c 2016 
336 |a Text  |b txt  |2 rdacontent 
337 |a Computermedien  |b c  |2 rdamedia 
338 |a Online-Ressource  |b cr  |2 rdacarrier 
520 |a Predictive genetic testing for a neurodegenerative condition in one individual in a family may have implications for other family members, in that it can reveal their genetic status. Herein a complex clinical case is explored where the testing wish of one family member was in direct conflict to that of another. The son of a person at 50% risk of an autosomal dominant neurodegenerative condition requested testing to reveal his genetic status. The main reason for the request was if he had the familial mutation, he and his partner planned to utilise preimplantation genetic diagnosis to prevent his offspring having the condition. His at-risk parent was clear that if they found out they had the mutation, they would commit suicide. We assess the potential benefits and harms from acceding to or denying such a request and present an approach to balancing competing rights of individuals within families at risk of late-onset genetic conditions, where family members have irreconcilable differences with respect to predictive testing. We argue that while it may not be possible to completely avoid harm in these situations, it is important to consider the magnitude of risks, and make every effort to limit the potential for adverse outcomes. 
540 |a © 2016 BMJ Publishing Group Ltd and the Institute of Medical Ethics 
650 4 |a Behavioral sciences  |x Sociology  |x Human societies  |x Social institutions  |x Families  |x Family members  |x Parents 
650 4 |a Biological sciences  |x Biology  |x Genetics  |x Medical genetics 
650 4 |a Biological sciences  |x Biology  |x Genetics  |x Population genetics  |x Genetic variation  |x Genetic mutation 
650 4 |a Behavioral sciences  |x Sociology  |x Human societies  |x Social institutions  |x Families  |x Family members  |x Sons 
650 4 |a Behavioral sciences  |x Sociology  |x Human societies  |x Social institutions  |x Families  |x Family members 
650 4 |a Health sciences  |x Medical conditions  |x Diseases  |x Genetic diseases  |x Nervous system heredodegenerative disorders  |x Huntington disease 
650 4 |a Biological sciences  |x Biology  |x Developmental biology  |x Embryology  |x Embryos 
650 4 |a Biological sciences  |x Biology  |x Genetics  |x Genetic inheritance 
650 4 |a Social sciences  |x Population studies  |x Human populations  |x At risk population  |x Youths at risk 
650 4 |a Biological sciences  |x Biology  |x Genetics  |x Medical genetics  |x Genetic services  |x Genetic screening  |x Clinical ethics 
655 4 |a research-article 
700 1 |a Wallace, Jane  |e verfasserin  |4 aut 
700 1 |a Gillam, Lynn  |e verfasserin  |4 aut 
700 1 |a Burgess, Matthew  |e verfasserin  |4 aut 
700 1 |a Delatycki, Martin B  |e verfasserin  |4 aut 
773 0 8 |i Enthalten in  |t Journal of Medical Ethics. in  |d Society for the Study of Medical Ethics  |g 42(2016), 10, Seite 640-642  |w (DE-627)JST049950649  |x 14734257  |7 nnns 
773 1 8 |g volume:42  |g year:2016  |g number:10  |g pages:640-642 
856 4 0 |u http://www.jstor.org/stable/44014444  |3 Volltext 
912 |a GBV_USEFLAG_A 
912 |a GBV_JST 
951 |a AR 
952 |d 42  |j 2016  |e 10  |h 640-642