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Communication of Information about Genetic Risks: Putting Families at the Center

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Communication of Information about Genetic Risks : Putting Families at the Center. / Mendes, Álvaro; Metcalfe, Alison; Paneque, Milena; Sousa, Liliana; Clarke, Angus J.; Sequeiros, Jorge.

In: Family Process, Vol. 57, No. 3, 01.09.2018, p. 836-846.

Research output: Contribution to journalArticlepeer-review

Harvard

Mendes, Á, Metcalfe, A, Paneque, M, Sousa, L, Clarke, AJ & Sequeiros, J 2018, 'Communication of Information about Genetic Risks: Putting Families at the Center', Family Process, vol. 57, no. 3, pp. 836-846. https://doi.org/10.1111/famp.12306

APA

Mendes, Á., Metcalfe, A., Paneque, M., Sousa, L., Clarke, A. J., & Sequeiros, J. (2018). Communication of Information about Genetic Risks: Putting Families at the Center. Family Process, 57(3), 836-846. https://doi.org/10.1111/famp.12306

Vancouver

Mendes Á, Metcalfe A, Paneque M, Sousa L, Clarke AJ, Sequeiros J. Communication of Information about Genetic Risks: Putting Families at the Center. Family Process. 2018 Sep 1;57(3):836-846. https://doi.org/10.1111/famp.12306

Author

Mendes, Álvaro ; Metcalfe, Alison ; Paneque, Milena ; Sousa, Liliana ; Clarke, Angus J. ; Sequeiros, Jorge. / Communication of Information about Genetic Risks : Putting Families at the Center. In: Family Process. 2018 ; Vol. 57, No. 3. pp. 836-846.

Bibtex Download

@article{8721ae9de70f45a4a9a3fb0464e618a1,
title = "Communication of Information about Genetic Risks: Putting Families at the Center",
abstract = "Genetic information is a family affair. With the expansion of genomic technologies, many new causal genes and variants have been established and the potential for molecular diagnoses increased, with implications not only for patients but also their relatives. The need for genetic counseling and intrafamilial circulation of information on genetic risks grew accordingly. Also, the amount and, particularly, the complexity of the information to convey multiplied. Sharing information about genetic risks with family members, however, has never been an easy matter and often becomes a source of personal and familial conflicts and distress. Ethical requisites generally prevent healthcare professionals from directly contacting their consultands' relatives (affected or still at risk), who often feel unsupported throughout that process. We discuss here the communication of genetic risks to family members. We first consider genomic testing as a basis for family-centered health care, as opposed to a predominant focus on the individual. We reviewed the literature on sharing genetic risk information with family members, and the associated ethical issues for professionals. Some clinical cases are presented and discussed, and key issues for meeting the needs of individuals and families are addressed. We argue that genetic information is inextricably linked to the family and that communicating about genetic risks is a process grounded within the broader milieu of family relationships and functioning. We conclude for the need for a more family-centered approach and interventions that can promote sensitive attitudes to the provision of genetic information to and within the family, as well as its inclusion in educational and training programmes for genetic healthcare professionals.",
keywords = "Family Communication, Family-Centered Care, Genetic Counseling, Genetic Information, Genetic Risk, Genetic Testing, Genomics",
author = "{\'A}lvaro Mendes and Alison Metcalfe and Milena Paneque and Liliana Sousa and Clarke, {Angus J.} and Jorge Sequeiros",
year = "2018",
month = sep,
day = "1",
doi = "10.1111/famp.12306",
language = "English",
volume = "57",
pages = "836--846",
journal = "Family Process",
issn = "0014-7370",
publisher = "Wiley-Blackwell",
number = "3",

}

RIS (suitable for import to EndNote) Download

TY - JOUR

T1 - Communication of Information about Genetic Risks

T2 - Putting Families at the Center

AU - Mendes, Álvaro

AU - Metcalfe, Alison

AU - Paneque, Milena

AU - Sousa, Liliana

AU - Clarke, Angus J.

AU - Sequeiros, Jorge

PY - 2018/9/1

Y1 - 2018/9/1

N2 - Genetic information is a family affair. With the expansion of genomic technologies, many new causal genes and variants have been established and the potential for molecular diagnoses increased, with implications not only for patients but also their relatives. The need for genetic counseling and intrafamilial circulation of information on genetic risks grew accordingly. Also, the amount and, particularly, the complexity of the information to convey multiplied. Sharing information about genetic risks with family members, however, has never been an easy matter and often becomes a source of personal and familial conflicts and distress. Ethical requisites generally prevent healthcare professionals from directly contacting their consultands' relatives (affected or still at risk), who often feel unsupported throughout that process. We discuss here the communication of genetic risks to family members. We first consider genomic testing as a basis for family-centered health care, as opposed to a predominant focus on the individual. We reviewed the literature on sharing genetic risk information with family members, and the associated ethical issues for professionals. Some clinical cases are presented and discussed, and key issues for meeting the needs of individuals and families are addressed. We argue that genetic information is inextricably linked to the family and that communicating about genetic risks is a process grounded within the broader milieu of family relationships and functioning. We conclude for the need for a more family-centered approach and interventions that can promote sensitive attitudes to the provision of genetic information to and within the family, as well as its inclusion in educational and training programmes for genetic healthcare professionals.

AB - Genetic information is a family affair. With the expansion of genomic technologies, many new causal genes and variants have been established and the potential for molecular diagnoses increased, with implications not only for patients but also their relatives. The need for genetic counseling and intrafamilial circulation of information on genetic risks grew accordingly. Also, the amount and, particularly, the complexity of the information to convey multiplied. Sharing information about genetic risks with family members, however, has never been an easy matter and often becomes a source of personal and familial conflicts and distress. Ethical requisites generally prevent healthcare professionals from directly contacting their consultands' relatives (affected or still at risk), who often feel unsupported throughout that process. We discuss here the communication of genetic risks to family members. We first consider genomic testing as a basis for family-centered health care, as opposed to a predominant focus on the individual. We reviewed the literature on sharing genetic risk information with family members, and the associated ethical issues for professionals. Some clinical cases are presented and discussed, and key issues for meeting the needs of individuals and families are addressed. We argue that genetic information is inextricably linked to the family and that communicating about genetic risks is a process grounded within the broader milieu of family relationships and functioning. We conclude for the need for a more family-centered approach and interventions that can promote sensitive attitudes to the provision of genetic information to and within the family, as well as its inclusion in educational and training programmes for genetic healthcare professionals.

KW - Family Communication

KW - Family-Centered Care

KW - Genetic Counseling

KW - Genetic Information

KW - Genetic Risk

KW - Genetic Testing

KW - Genomics

UR - http://www.scopus.com/inward/record.url?scp=85046602772&partnerID=8YFLogxK

U2 - 10.1111/famp.12306

DO - 10.1111/famp.12306

M3 - Article

AN - SCOPUS:85046602772

VL - 57

SP - 836

EP - 846

JO - Family Process

JF - Family Process

SN - 0014-7370

IS - 3

ER -

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