Álvaro Mendes (071F-14C3-C6FD)

Curriculum Vitae

Álvaro Mendes

Álvaro Mendes is a Senior Associate Researcher at the Centre for Predictive and Preventive Genetics (CGPP), integrated into i3S at the University of Porto, under the Stimulus for Scientific Employment initiative by the Portuguese Foundation for Science and Technology (FCT) (CEECIND/02615/2017). He holds a PhD in Health Sciences and Technology from the University of Aveiro and a Licentiate Degree in Clinical Psychology from the University of Coimbra. His research focuses on family communication about genetic risk, genetic counselling, attitudes toward sharing genetic and genomic information, and related practices and policies. He is also interested in exploring the psychosocial dimensions of genetic testing and supporting individuals and families living with inherited genetic conditions. Álvaro leads an FCT-funded project (2022.04025.PTDC, DECIDE) on facilitating the communication of risk information to patients' family members within genetic counselling contexts (2023–2026). He also integrates the European Joint Programme on Rare Diseases-funded project "SAPIENCE - Social and Psychological Long-Term Consequences of NMDA Encephalitis". Previously, he was the country lead for "Your DNA, Your Say," a Wellcome Trust-funded project examining global public attitudes toward genomic information sharing. Álvaro is a Chartered Clinical and Health Psychologist and Psychotherapist, accredited by the Portuguese Psychologists' Association. He is also a certified systemic family and couples therapist, accredited by the Portuguese Society of Family Therapy. He is part of the multidisciplinary team of the pre-symptomatic testing protocol for late-onset neurological diseases at CGPP. Álvaro actively contributes to the European Society of Human Genetics (ESHG) through his roles on the Ethics and Policy Committee and the Scientific Programme Committee, focusing on Ethical, Legal, and Psychosocial Aspects of Genetics. He is involved in the Genetic Counselling & Testing working group of the European Huntington Disease Network and serves on the i3S Committee for Ethical and Responsible Conduct of Research. He is a member of the Advisory Board for the Journal of Community Genetics and Senior Editor of the Annals of Human Genetics. He has longstanding collaborations with patient advocacy organizations and frequently teaches in Master’s and PhD programs in Health and Clinical Psychology and Genetic Counselling. To date, Álvaro has co-supervised one completed PhD thesis (FCT-funded) and 10 MSc dissertations. He currently mentors one postdoctoral researcher, and co-supervises two PhD candidates (both FCT-funded), and three MSc dissertations. His work has reached an H-index of 16, with over 50 peer-reviewed scientific publications, including the European Journal of Human Genetics, Social Science & Medicine, and Family Process. Main key-words in his Ciência Vitae CV are Family; Psychology; Communication; Decision-making; Genetic testing; Qualitative research; Genetic counselling.

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Identification

Personal identification

Full name: Álvaro Mendes
Gender: Male

Citation names

Mendes, Álvaro

Author identifiers

Ciência ID: 071F-14C3-C6FD
ORCID iD: 0000-0002-8766-7646
Researcher Id: K-4394-2013
Scopus Author Id: 36508979800

Email addresses

alvaro.mendes@ibmc.up.pt (Professional)

Telephones

Telephone

226074912 Ext.: 6181 (Professional)

Addresses

i3S, Instituto de Investigação e inovação em Saúde; IBMC, Instituto de Biologia Molecular e Celular - UnIGENe; Universidade do Porto . Rua Alfredo Allen, 208, 4200-135 P, Porto, Porto, Portugal (Professional)

Websites

https://www.linkedin.com/in/%C3%A1lvaro-mendes-593052147/ (Professional)
https://www.i3s.up.pt/content/people?id=379&idg=50 (Scholar)

Knowledge fields

Social Sciences - Psychology
Social Sciences - Other Social Sciences - Social Sciences, Interdisciplinary
Medical and Health Sciences - Health Sciences - Social Biomedical Sciences

Languages

Language	Speaking	Reading	Writing	Listening	Peer-review
Portuguese (Mother tongue)
English	Advanced (C1)	Proficiency (C2)	Advanced (C1)	Proficiency (C2)	Proficiency (C2)

Education

	Degree	Classification
2004 - 2016 Concluded	Chartered Systemic Family and Couples Therapist (Título de especialista) Sociedade Portuguesa de Terapia Familiar, Portugal
2016 Concluded	Specialist in Clinical and Health Psychology (Título de especialista) Ordem dos Psicólogos Portugueses, Portugal
2016 Concluded	Advanced specialty in Psychotherapy (Título de especialista) Ordem dos Psicólogos Portugueses, Portugal
2007/10/01 - 2012/04/17 Concluded	Health Sciences and Technology (Doutoramento) Universidade de Aveiro, Portugal "Family and genetic counselling: the case of hereditary cancers" (THESIS/DISSERTATION)	Approved by unanimity
1997/09/15 - 2002/07/22 Concluded	Clinical Psychology (Licenciatura) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal	15
1992 - 1997 Concluded	High School (Ensino secundário) Escola Secundária Artur Gonçalves, Portugal	16

Affiliation

Science

	Category Host institution	Employer
2019/03/01 - Current	Auxiliary Researcher (Research)	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2024/04/14 - 2024/04/21	Visiting Researcher (Research)	Fundação para a Ciência e a Tecnologia, Portugal
	Umeå Universitet Institutionen för diagnostik och intervention, Sweden
2013/08/01 - 2019/02/28	Postdoc (Research)	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
	Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal
2018/02 - 2018/02	Visiting Researcher (Research)	King's College London Florence Nightingale School of Nursing and Midwifery, United Kingdom

2016/06 - 2016/07	Visiting Researcher (Research)	Cardiff University Institute of Medical Genetics, United Kingdom

2015/11 - 2015/12	Visiting Researcher (Research)	Uppsala Universitet Biomedicinsk stralningsvetenskap, Sweden

2012/09/30 - 2013/06/30	Research Assistant (Research)	Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal
	Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal
2003/09/01 - 2005/08/30	Research Assistant (Research)	Universidade de Aveiro, Portugal
	Universidade de Aveiro, Portugal
2002/09 - 2003/07	Research Assistant (Research)	Instituto Nacional de Saúde Doutor Ricardo Jorge, Portugal

Teaching in Higher Education

	Category Host institution	Employer
2014/09 - 2016/07	Invited Associate Professor (University Teacher)	Universidade de Aveiro, Portugal
	Universidade de Aveiro, Portugal
2005/09/01 - 2007/09/30	Lecturer (University Teacher)	Instituto Superior Miguel Torga, Portugal

Positions / Appointments

	Category Host institution	Employer
2016/03/01 - Current	Technical supervisor of the clinical psychology team	Centro de Genética Preditiva e Preventiva, Portugal
	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal

Others

	Category Host institution	Employer
2007/11/01 - 2011/10/31	PhD Candidate	Universidade de Aveiro, Portugal
	Universidade de Aveiro, Portugal
2001/09 - 2002/07	Intern in Clinical Psychology - Family and couples therapy	Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal

Projects

Grant

	Designation	Funders
2023/03/15 - Current	DECIDE - Deliberating genetic risks: decision-making and disclosure from genetic counselling to the family 2022.04025.PTDC Principal investigator Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal Universidade de Aveiro, Portugal	Fundação para a Ciência e a Tecnologia Ongoing
2022/06/15 - Current	SAPIENCE - Social and Psychological Long-Term Consequences of NMDA Receptor Encephalitis EJPRD21-040 Researcher Charité - Universitätsmedizin Berlin Institut für Medizin- Pflegepädagogik und Pflegewissenschaft, Germany	ERA-Net Cofund scheme Ongoing
2018/06/01 - Current	Maximising impact of research in neurodevelopment disorders (MINDDS) CA16210 Researcher	European Commission Ongoing
2017/06/01 - 2021/05/31	Your DNA, Your Say: public attitudes on the sharing of genomic information 206194/Z/17/Z National contact point Wellcome Genome Campus, United Kingdom	Wellcome Trust Concluded
2013/08/01 - 2019/02/28	Communication of information about genetic risk within the family: using evidence to develop family-centred services in genetic counselling SFRH/BPD/88647/2012 Principal investigator Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal	Fundação para a Ciência e a Tecnologia Concluded
2012/09/01 - 2013/06	Assessment of the public knowledge about health and medical information in Portugal HMSP/IISE/SAU-ICT/0003/2009 Research Fellow Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal	Harvard Medical School Concluded
2010/01 - 2011/01	Apoio psicoeducativo a cuidadores familiares de idosos com demência 100131/FCG/2009 Other Universidade de Aveiro, Portugal	Fundação Calouste Gulbenkian Concluded
2003/09 - 2005/08	ProFamílias: Apoio das unidades de saúde a doentes crónicos e suas famílias 57069/2002 Research Fellow Universidade de Aveiro, Portugal	Fundação Calouste Gulbenkian Concluded

Contract

	Designation	Funders
2019/03/01 - Current	Deliberating information-sharing in genetic counselling: professional and patient decision making in a complex healthcare environment CEECIND/02615/2017 Principal investigator Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal	Fundação para a Ciência e a Tecnologia Ongoing
2019/01/01 - 2019/12/31	Institute for Research and Innovation in Health Sciences UID/BIM/04293/2019 LA/P/0070/2020 10.54499/LA/P/0070/2020 Instituto Nacional de Engenharia Biomédica, Portugal Universidade do Porto, Portugal Universidade do Porto Instituto de Biologia Molecular e Celular, Portugal Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal Universidade do Porto Instituto de Patologia e Imunologia Molecular, Portugal	Fundação para a Ciência e a Tecnologia Concluded

Other

	Designation	Funders
2021/01/01 - Current	Instituto de Investigação e Inovação em Saúde (UID/BIM/04293/2020 Other Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal	Fundação para a Ciência e a Tecnologia Ongoing
2015/02 - 2020/12/31	Instituto de Investigação e Inovação em Saúde UID/BIM/04293/2013 Researcher	Fundação para a Ciência e a Tecnologia Ongoing
2015/09 - 2018/03	Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives (CHIP ME) COST Action IS1303 Researcher	EU Framework Programme for Research and Innovation Excellent Science Concluded

Outputs

Publications

Book	Liliana Sousa; Ana Paula Relvas; Mendes, Álvaro. Enfrentar a velhice e a doença crónica: Apoio das unidades de saúde a doentes crónicos e suas famílias. Lisboa, Portugal: CLIMEPSI Editores. 2007. Published
Book chapter	Álvaro Mendes. "Cidadania, responsabilidade e ética relacional: Testes genéticos e a comunicação de informação sobre riscos de doenças genéticas na família". In Cidadania e genética, edited by Helena Machado, 131-150. Porto, Portugal: Edições Afrontamento, 2017. Published
Conference abstract	Barbosa, Maria; Policarpo, Mariana; Mendes, Álvaro; de Lemos, Marina Serra; Paneque, Milena. Corresponding author: Barbosa, Maria. ""Narrating ataxia: adapting the expressive writing paradigm for ataxia patients in the context of a genetic counselling narrative group intervention"". Porto, 2022.
Conference poster	Iara Ribeiro; Parente Freixo, João; João Tavares; Liliana Sousa; Mendes, Álvaro. "Disclosure of genetic risk to the family: attitudes of Portuguese general population". Paper presented in European Society of Human Genetics Conference, 2024. Catarina Seidi; Liliana Sousa; Mendes, Álvaro. "Healthcare professionals' experiences on parent-children communication of genetic risk: a scoping review". Paper presented in European Society of Human Genetics Conference, 2024. Barbosa, Maria; Dias, Sofia Fontoura ; Júlio, Filipa; Paneque, Milena; Sales, Célia ; Sequeiros, Jorge; Sousa, Liliana; Mendes, Álvaro. Corresponding author: Barbosa, Maria. "What process studies in genetic counseling can teach us about the communication of genetic information to family members: a scoping review". Paper presented in World Congress of Genetic Counselling, 2023. Barbosa, Maria; Policarpo, Mariana; de Lemos, Marina Serra; Paneque, Milena; Mendes, Álvaro. Corresponding author: Barbosa, Maria. ""Narrating ataxia: psychosocial impact of an online genetic counselling narrative group intervention for persons with hereditary ataxia"". 2023. Dias, Sofia Fontoura; Barbosa, Maria; Júlio, Filipa; Paneque, Milena; Sequeiros, Jorge; Sousa, Liliana; Mendes, Álvaro. "Communicating genetic information in families with late-onset neurological diseases: A scoping review". Paper presented in World Congress of Genetic Counseling, 2023. Maria Barbosa; Mariana Polarpo; Paneque, Milena; Marina Lemos; Mendes, Álvaro. "Psychological impacts of an online genetic counselling narrative group intervention in people with hereditary ataxia". Paper presented in 36th Conference of the European Health Psychology Society, 2022. Paneque, Milena; Mariana Policarpo; Maria Barbosa; Marina Lemos; Mendes, Álvaro. "An online genetic counselling narrative group as a tool for supporting patients with hereditary ataxias in Portugal". 2022. Barbosa, Maria; Policarpo, Mariana; Paneque, Milena; de Lemos, Marina Serra; Mendes, Álvaro. Corresponding author: Barbosa, Maria. "Psychological impacts of an online genetic counseling narrative group intervention in people with hereditary ataxia". Paper presented in 36th Annual Conference of the European Health Psychology Society, 2022. Mariana Policarpo; Mendes, Álvaro; Marina Serra de Lemos; Paneque, Milena. "Genetic counselling narrative intervention group as a tool to support patients with hereditary ataxias in Portugal". Paper presented in 25th Annual Meeting of the Portuguese Society of Human Genetics, 2021. Mendes, Álvaro; Sequeiros, Jorge; Paneque, Milena; Mendes, A; Paneque, M; Sequeiros, J. "Disclosure of genetic information to patients’ relatives: healthcare professionals’ perspective on perceived responsibilities and confidentiality of genetic information.". Paper presented in 25th Annual Meeting of the Portuguese Society of Human Genetics, 2021. Mendes, Álvaro. "Exploring responsibility about reproduction in the accounts of individuals at risk for and affected by late-onset neurological diseases: a qualitative study". Paper presented in ESHG Conference, 2020. Álvaro Mendes; Jorge Sequeiros; Angus Clarke. "Exploring responsibility about reproduction in the accounts of individuals at risk for and affected by late onset neurological diseases: a qualitative study". Paper presented in 23ª Reunião Anual da Sociedade Portuguesa de Genética Humana, 2019. 10.1183/1393003.congress-2017.oa315 Márcia Carvalho; José Pereira; Catarina Costa; Mendes, Álvaro; Marina Lemos; Milena Paneque. "O estágio no contexto do aconselhamento genético como experiência de formação em Ética e Deontologia.". Paper presented in Seminário Luso-Brasileiro de Ética em Psicologia e Educação., 2019. Mendes, Álvaro. "Transgenerational management of information about Huntington disease within the family: from past silence to normalization in the present". Paper presented in ESHG Conference, 2019. José Pereira; Catarina Costa; Milena Paneque; Jorge Sequeiros; Mendes, Álvaro. "Young adults' experiences with risk and with pre-symptomatic testing for late-onset neurological disorders: findings from a Portuguese qualitative study". Paper presented in ESHG Conference, 2017. Mendes, Álvaro; Alison Metcalfe; Milena Paneque; Liliana Sousa; Angus Clarke; Jorge Sequeiros. "Communicating information about genetic risks within the family: putting the family at the heart of it.". Paper presented in ESHG Conference, 2017. Sara Guerra; Mendes, Álvaro; Liliana Sousa. "Affective meanings of inheriting and “donating” a late-onset neurological genetic illness: an exploratory qualitative study.". Paper presented in UA Research Day 2017, 2017. Mendes, Álvaro; Christine Farnos; Linda Battistuzzi; Pascal Borry; Hermann Nys; Mark Rothstein; Emmanuelle Rial-Sebbag. "Disclosing genetic information to family members: a comparative law study of the legal regimes applicable to patients’ and health professionals’ liability.". Paper presented in ESHG Conference, 2016. Álvaro Mendes; Liliana Sousa. "Challenges for cancer genetic counselling: findings from Portuguese oncogenetic services". Paper presented in ESHG Conference, 2012. Henrique Vicente; Marta Patrão; Mendes, Álvaro; Sara Guerra; Liliana Sousa. "The multigenarational family: Towards a new understanding of family dynamics". Paper presented in XVII IFTA World Family Therapy Congress, 2009. Mendes, Álvaro; Liliana Sousa. "The genetic counselling experience: a case-study of an hereditary cancers’ consultation". Paper presented in XXIX International Congress of Psychology, 2008. Liliana Sousa; Mendes, Álvaro; Ana Paula Relvas. "Psycho-educational intervention in multi-families discussion groups: the case of stroke patients". Paper presented in XV IFTA World Family Therapy Congress, 2006.
Journal article	Couto, Daniela; Sequeiros, Jorge; Lima, Manuela; Sousa, Liliana; Mendes, Álvaro. Corresponding author: Mendes, Álvaro. "From stigma to increased social acceptance? Living with Machado-Joseph disease in São Miguel, Azores, Portugal". Journal of Community Genetics (2024): http://dx.doi.org/10.1007/s12687-024-00731-w. 10.1007/s12687-024-00731-w José D. Pereira; Catarina Costa; Andreia Santos; Marina S. Lemos; Jorge Sequeiros; Milena Paneque; Álvaro Mendes. "“Living with a question mark”: psychosocial experience of Portuguese young adults at risk for hereditary amyloid transthyretin amyloidosis with polyneuropathy". Journal of Community Genetics (2024): https://doi.org/10.1007/s12687-024-00717-8. 10.1007/s12687-024-00717-8 Oliveira, Carla Roma; Seidi, Catarina; Sequeiros, Jorge; Sousa, Liliana; Mendes, Álvaro. "Health-related roles of older generations in families with inherited genetic conditions: a scoping review". Journal of Community Genetics 15 4 (2024): 351-361. http://dx.doi.org/10.1007/s12687-024-00713-y. 10.1007/s12687-024-00713-y Álvaro Mendes; Ainsley J. Newson. "Liminality between direct and family-mediated contact in the communication of genetic information to at-risk relatives". European Journal of Human Genetics (2024): https://doi.org/10.1038/s41431-024-01605-y. 10.1038/s41431-024-01605-y Mendes, Álvaro; Paneque, Milena; Sequeiros, Jorge. "Disclosure of genetic risk to family members: A qualitative study on healthcare professionals' perceived roles and responsibilities". European Journal of Medical Genetics 68 (2024): 104931. http://dx.doi.org/10.1016/j.ejmg.2024.104931. 10.1016/j.ejmg.2024.104931 Carla Roma Oliveira; Liliana Sousa; Pedro Sa-Couto; Jorge Sequeiros; Álvaro Mendes. "Living with Transthyretin-Related Familial Amyloid Polyneuropathy—TTR-FAP: Generativity, Satisfaction with Life and Health Perception in Older Affected Individuals". Journal of Adult Development (2023): https://doi.org/10.1007/s10804-023-09459-2. 10.1007/s10804-023-09459-2 Francesca Forzano; Olga Antonova; Angus J. Clarke; Mendes, Álvaro; et al.. "Reply to Letter by Tellier et al., ‘Scientific refutation of ESHG statement on embryo selection'". European Journal of Human Genetics 31 (2023): 279-281. Published Sara Guerra; Carla Oliveira; Catarina Seidi; Liliana Sousa; Álvaro Mendes. "Multifamily interventions in the context of inherited genetic conditions: A scoping review". Journal of Family Therapy (2023): https://doi.org/10.1111/1467-6427.12424. 10.1111/1467-6427.12424 Daniela Couto; Liliana Sousa; Sequeiros, Jorge; Manuela Lima; Mendes, Álvaro. "Restrictions in care following the COVID-19 pandemic severely impacted Machado-Joseph disease patients: a study in the Azores Islands, Portugal". Journal of Community Genetics 13 4 (2022): 459-461. Published Couto, Daniela; Sousa, Liliana; Sequeiros, Jorge; Lima, Manuela; Mendes, Álvaro. "Short Communication: Restrictions in care following the COVID-19 pandemic severely impacted Machado-Joseph disease patients: a study in the Azores Islands, Portugal". Journal of Community Genetics 13 4 (2022): 459-461. http://dx.doi.org/10.1007/s12687-022-00602-2. 10.1007/s12687-022-00602-2 Carla Roma Oliveira; Mendes, Álvaro; Sequeiros, Jorge; Liliana Sousa. "From older to younger generations: Intergenerational transmission of health-related roles in families with Huntington's disease". Journal of Aging Studies 61 (2022): Published Seidi, Catarina; Patrão, Marta; Guerra, Sara; Oliveira, Carla Roma; Mendes, Álvaro; Sousa, Liliana. "The experience of receiving and transmitting a genetic disease". Journal of Constructivist Psychology (2022): 1-16. http://dx.doi.org/10.1080/10720537.2022.2037113. Published • 10.1080/10720537.2022.2037113 Milne, R.; Morley, K.I.; Almarri, M.A.; Atutornu, J.; Baranova, E.E.; Bevan, P.; Cerezo, M.; et al. "Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries". Genetics in Medicine (2022): http://www.scopus.com/inward/record.url?eid=2-s2.0-85124015446&partnerID=MN8TOARS. 10.1016/j.gim.2022.01.002 Carla Roma Oliveira; Álvaro Mendes; Liliana Sousa. "Impacto dos papéis dos mais velhos na promoção da saúde em famílias com paramiloidose". PSICOLOGIA (2021): https://doi.org/10.17575/psicologia.v35i2.1732. 10.17575/psicologia.v35i2.1732 Álvaro Mendes; Jorge Sequeiros; Angus J. Clarke. "Between responsibility and desire: Accounts of reproductive decisions from those at risk for or affected by late-onset neurological diseases". Journal of Genetic Counseling (2021): https://doi.org/10.1002/jgc4.1415. 10.1002/jgc4.1415 Carla Roma Oliveira; Álvaro Mendes; Jorge Sequeiros; Liliana Sousa. "Role of older generations in the family's adjustment to Huntington disease". Journal of Community Genetics (2021): https://doi.org/10.1007/s12687-021-00523-6. 10.1007/s12687-021-00523-6 Milne, R.; Morley, K.I.; Almarri, M.A.; Anwer, S.; Atutornu, J.; Baranova, E.E.; Bevan, P.; et al. "Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries". Genome Medicine 13 1 (2021): http://www.scopus.com/inward/record.url?eid=2-s2.0-85106873537&partnerID=MN8TOARS. 10.1186/s13073-021-00903-0 Forzano, F.; Antonova, O.; Clarke, A.; de Wert, G.; Hentze, S.; Jamshidi, Y.; Moreau, Y.; et al. "The use of polygenic risk scores in pre-implantation genetic testing: an unproven, unethical practice". European Journal of Human Genetics (2021): http://www.scopus.com/inward/record.url?eid=2-s2.0-85121535929&partnerID=MN8TOARS. 10.1038/s41431-021-01000-x Guido de Wert; Wibo Dondorp; Angus Clarke; Elisabeth Dequecker; Christophe Cordier; Zandra Deans. "Opportunistic genomic screening. Recommendations of the European Society of Human Genetics.". European journal of human genetics : EJHG (2020): https://doi.org/10.1038/s41431-020-00758-w. 10.1038/s41431-020-00758-w Anna Middleton; Richard Milne; Mohamed Almarri; Shamim Anwer; Jerome Atutornu; Elena Baranova. "Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?". American journal of human genetics (2020): https://doi.org/10.1016/j.ajhg.2020.08.023. 10.1016/j.ajhg.2020.08.023 Vigdis Stefansdottir; Eirny Thorolfsdottir; Hakon B. Hognason; Christine Patch; Carla van El; Sabine Hentze; Christophe Cordier; Álvaro Mendes; Jon J. Jonsson. "Web-based return of BRCA2 research results: one-year genetic counselling experience in Iceland". European Journal of Human Genetics (2020): https://doi.org/10.1038/s41431-020-0665-1. 10.1038/s41431-020-0665-1 Carla Roma Oliveira; Álvaro Mendes; Jorge Sequeiros; Liliana Sousa. "Management of information within Portuguese families with Huntington disease: a transgenerational process for putting the puzzle together". European Journal of Human Genetics (2020): https://doi.org/10.1038/s41431-020-0630-z. 10.1038/s41431-020-0630-z Fellmann, F.; Rial-Sebbag, E.; Patch, C.; Hentze, S.; Stefandottir, V.; Mendes, Á.; van El, C.G.; Cornel, M.C.; Forzano, F.. "ESHG PPPC Comments on postmortem use of genetic data for research purposes". European Journal of Human Genetics 28 2 (2020): 144-146. http://www.scopus.com/inward/record.url?eid=2-s2.0-85074573318&partnerID=MN8TOARS. 10.1038/s41431-019-0525-z Abreu, L.; Borlido-Santos, J.; Mendes, Á.; Vilar-Correia, M.R.. "Patients' perceptions of family engagement in health information practices: influences on the self-management of asthma". Journal of Communication in Healthcare 13 1 (2020): 17-26. http://www.scopus.com/inward/record.url?eid=2-s2.0-85082948452&partnerID=MN8TOARS. 10.1080/17538068.2020.1742490 Alvaro Mendes; Carmen Elisa Travieso; Liliana Sousa. "A diabetes não dói, não se sente, mas está cá dentro!". Psychologica (2019): https://doi.org/10.14195/1647-8606_62-2_1. 10.14195/1647-8606_62-2_1 Álvaro Mendes; Milena Paneque; Angus Clarke; Jorge Sequeiros. "Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease". European Journal of Human Genetics 27 3 (2019): 353-359. https://doi.org/10.1038/s41431-018-0308-y. 10.1038/s41431-018-0308-y Paneque, M.; Félix, J.; Mendes, Á.; Lemos, C.; Ledo, S.; Silva, J.; Sequeiros, J.. "Twenty years of a pre-symptomatic testing protocol for late-onset neurological diseases in Portugal,Vinte anos de um protocolo de teste pré-sintomático para doenças neurológicas de início tardio em Portugal". Acta Medica Portuguesa 32 4 (2019): 295-304. http://www.scopus.com/inward/record.url?eid=2-s2.0-85065766376&partnerID=MN8TOARS. 10.20344/amp.10526 Fellmann, F.; van El, C.G.; Charron, P.; Michaud, K.; Howard, H.C.; Boers, S.N.; Clarke, A.J.; et al. "European recommendations integrating genetic testing into multidisciplinary management of sudden cardiac death". European Journal of Human Genetics 27 12 (2019): 1763-1773. http://www.scopus.com/inward/record.url?eid=2-s2.0-85068224581&partnerID=MN8TOARS. 10.1038/s41431-019-0445-y Carrieri, D.; Howard, H.C.; Benjamin, C.; Clarke, A.J.; Dheensa, S.; Doheny, S.; Hawkins, N.; et al. "Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics". European Journal of Human Genetics 27 2 (2019): 169-182. http://www.scopus.com/inward/record.url?eid=2-s2.0-85052918994&partnerID=MN8TOARS. 10.1038/s41431-018-0285-1 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): http://europepmc.org/abstract/med/28714147. 10.1111/famp.12306 Borry, P.; Bentzen, H.B.; Budin-Ljøsne, I.; Cornel, M.C.; Howard, H.C.; Feeney, O.; Jackson, L.; et al. "The challenges of the expanded availability of genomic information: an agenda-setting paper". Journal of Community Genetics 9 2 (2018): 103-116. http://www.scopus.com/inward/record.url?eid=2-s2.0-85029899417&partnerID=MN8TOARS. 10.1007/s12687-017-0331-7 Sirchia, F.; Carrieri, D.; Dheensa, S.; Benjamin, C.; Kayserili, H.; Cordier, C.; Van El, C.G.; et al. "Recontacting or not recontacting? A survey of current practices in clinical genetics centres in Europe". European Journal of Human Genetics 26 7 (2018): 946-954. http://www.scopus.com/inward/record.url?eid=2-s2.0-85045735362&partnerID=MN8TOARS. 10.1038/s41431-018-0131-5 Middleton, A.; Mendes, Á.; Benjamin, C.M.; Howard, H.C.. "Direct-to-consumer genetic testing: Where and how does genetic counseling fit?". Personalized Medicine 14 3 (2017): 249-257. http://www.scopus.com/inward/record.url?eid=2-s2.0-85019375019&partnerID=MN8TOARS. 10.2217/pme-2017-0001 Oliveira, C.R.; Mendes, Á.; Sousa, L.. "Health promotion in families with paramyloidosis: the role of elders with younger family members,Promoção da saúde em famílias com paramiloidose: papéis dos mais velhos junto dos mais novos". Cadernos de saude publica 33 5 (2017): e00185515-e00185515. http://www.scopus.com/inward/record.url?eid=2-s2.0-85021859333&partnerID=MN8TOARS. 10.1590/0102-311X00185515 Mendes, Á.; Abreu, L.; Vilar-Correia, M.R.; Borlido-Santos, J.. "“That Should Be Left to Doctors, That’s What They are There For!”—Exploring the Reflexivity and Trust of Young Adults When Seeking Health Information". Health Communication 32 9 (2017): 1076-1081. http://www.scopus.com/inward/record.url?eid=2-s2.0-84980395589&partnerID=MN8TOARS. 10.1080/10410236.2016.1199081 Mendes, Á.; Sousa, L.; Sequeiros, J.; Clarke, A.. "Discredited legacy: Stigma and familial amyloid polyneuropathy in Northwestern Portugal". Social Science and Medicine 182 (2017): 73-80. http://www.scopus.com/inward/record.url?eid=2-s2.0-85018469092&partnerID=MN8TOARS. 10.1016/j.socscimed.2017.04.026 Oliveira, C.R.; Mendes, A.; Sousa, L.. "From older to younger: Intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy". European Journal of Human Genetics 25 6 (2017): 687-693. http://www.scopus.com/inward/record.url?eid=2-s2.0-85015963737&partnerID=MN8TOARS. 10.1038/ejhg.2017.40 Mendes, Á.; Paneque, M.; Sousa, L.; Clarke, A.; Sequeiros, J.. "How communication of genetic information within the family is addressed in genetic counselling: A systematic review of research evidence". European Journal of Human Genetics 24 3 (2016): 315-325. http://www.scopus.com/inward/record.url?eid=2-s2.0-84958109101&partnerID=MN8TOARS. 10.1038/ejhg.2015.174 Sousa, L.; Patrão, M.; Mendes, Á.. "Material inheritances: An affective story in the history of elderly persons". International Journal of Ageing and Later Life 9 2 (2015): 35-52. http://www.scopus.com/inward/record.url?eid=2-s2.0-84948138912&partnerID=MN8TOARS. 10.3384/ijal.1652-8670.15266 Paneque, M.; Mendes, Á.; Saraiva, J.; Sequeiros, J.. "Genetic Counseling in Portugal: Education, Practice and a Developing Profession". Journal of Genetic Counseling 24 4 (2015): 548-552. http://www.scopus.com/inward/record.url?eid=2-s2.0-84938200744&partnerID=MN8TOARS. 10.1007/s10897-015-9827-7 Paneque, M.; Mendes, Á.; Guimarães, L.; Sequeiros, J.; Skirton, H.. "Genetics Health Professionals’ Views on Quality of Genetic Counseling Service Provision for Presymptomatic Testing in Late-Onset Neurological Diseases in Portugal: Core Components, Specific Challenges and the Need for Assessment Tools". Journal of Genetic Counseling 24 4 (2015): 616-625. http://www.scopus.com/inward/record.url?eid=2-s2.0-84938211827&partnerID=MN8TOARS. 10.1007/s10897-014-9784-6 Mendes, A.; Chiquelho, R.; Santos, T.A.; Sousa, L.. "Supporting families in genetic counselling services: A psychoeducational multifamily discussion group for at-risk colorectal cancer families". Journal of Family Therapy 37 3 (2015): 343-360. http://www.scopus.com/inward/record.url?eid=2-s2.0-84932195385&partnerID=MN8TOARS. 10.1111/1467-6427.12016 Mendes, Álvaro. "The resilience of migrant health: plural and transnational therapeutic itineraries.". Revista Interdisciplinar da Mobilidade Humana, 21(40): 69-92. (2013): http://dx.doi.org/10.1590/S1980-85852013000100005 Mendes, A.; Sousa, L.; Paneque, M.. "From constraints to opportunities? Provision of psychosocial support in Portuguese oncogenetic counseling services". Journal of Genetic Counseling 22 6 (2013): 771-783. http://www.scopus.com/inward/record.url?eid=2-s2.0-84888135697&partnerID=MN8TOARS. 10.1007/s10897-013-9612-4 Guerra, S.R.; Mendes, Á.F.; Figueiredo, D.M.; Sousa, L.X.. "ProFamilies-dementia: A programme for elderly people with dementia and their families". Dementia 11 5 (2012): 589-596. http://www.scopus.com/inward/record.url?eid=2-s2.0-84866410004&partnerID=MN8TOARS. 10.1177/1471301211421061 Mendes, A.; Sousa, L.. "Families' experience of oncogenetic counselling: Accounts from a heterogeneous hereditary cancer risk population". Familial Cancer 11 2 (2012): 291-306. http://www.scopus.com/inward/record.url?eid=2-s2.0-84864713845&partnerID=MN8TOARS. 10.1007/s10689-012-9514-x Mendes, A.; Paneque, M.; Sousa, L.. "Are family-oriented interventions in Portuguese genetics services a remote possibility? Professionals' views on a multifamily intervention for cancer susceptibility families". Journal of Community Genetics 3 4 (2012): 311-318. http://www.scopus.com/inward/record.url?eid=2-s2.0-84869122227&partnerID=MN8TOARS. 10.1007/s12687-012-0079-z Mendes, Álvaro. "Doenças hereditárias, aconselhamento genético e redes sociais e familiares: da ética intergeracional ao papel dos mais velhos". 15 1 (2012): 199-216. Published Chiquelho, R.; Neves, S.; Mendes, A.; Relvas, A.P.; Sousa, L.. "proFamilies: A psycho-educational multi-family group intervention for cancer patients and their families". European Journal of Cancer Care 20 3 (2011): 337-344. http://www.scopus.com/inward/record.url?eid=2-s2.0-79952362081&partnerID=MN8TOARS. 10.1111/j.1365-2354.2009.01154.x Mendes, A.F.; Santos, T.A.; Sousa, L.. "Experiencing genetic counselling for hereditary cancers: The client's perspective". European Journal of Cancer Care 20 2 (2011): 204-211. http://www.scopus.com/inward/record.url?eid=2-s2.0-79551469166&partnerID=MN8TOARS. 10.1111/j.1365-2354.2010.01201.x Mendes, Á.; Chiquelho, R.; Santos, T.A.; Sousa, L.. "Family matters: Examining a multi-family group intervention for women with BRCA mutations in the scope of genetic counselling". Journal of Community Genetics 1 4 (2010): 161-168. http://www.scopus.com/inward/record.url?eid=2-s2.0-79952363526&partnerID=MN8TOARS. 10.1007/s12687-010-0022-0 Mendes, Álvaro. "ProDoentes: Programa de apoio psico-educativo a doentes oncológicos". 41 (2006): 231-247. Published

Activities

Oral presentation

	Presentation title	Event name Host (Event location)
2024/09/03	Charting the decision-making process in family disclosure of genetic risk: a multi-method prospective study	European Health Psychology Society (Cascais, Portugal)
2024/06/26	Genetic counselling, care and the communication of risk information within the family	COMET – Communication, Medicine and Ethics Conference University of Brescia (Brescia, Italy)
2023/06/21	Preferences of people with inherited genetic conditions and family members in Portugal toward informing at-risk relatives of genetic risk	European Society of Human Genetics Conference European Society of Human Genetics (Glasgow, United Kingdom)
2022/09/08	Significado afetivo associado à experiência de herdar e transmitir uma doença genética	14º Congresso Nacional de Psicologia da Saúde Universidade da Madeira
2022/05/05	Narrating ataxia: adapting the expressive writing paradigm for ataxia patients in the context of a genetic counselling narrative group intervention	15º Encontro de Investigação Jovem da Universidade do Porto Universidade do Porto
2021/11/18	Disclosure of genetic information to patients' relatives: healthcare professionals' perspective on perceived responsibilities and confidentiality of genetic information	Portuguese Society of Human Genetics (Virtual meeting, Portugal)
2021/10/28	Development of an online narrative group intervention to improve psychosocial support for people with hereditary ataxias	III World Congress on Genetic Counseliing Wellcome Trust Sanger Institute (Virtual meeting, United Kingdom)
2021/10/27	Affective meanings about inheriting and transmitting transthyretin-related familial amyloid polyneuropathy	III World Congress on Genetic Counselling Wellcome Trust Sanger Institute (Virtual meeting, United Kingdom)
2021/08/28	Healthcare professionals¿ views about responsibility in the sharing of genetic information to patients' relatives	European Society of Human Genetics (Virtual meeting)
2020/07/01	Decisions about reproduction from people at risk for or affected by late-onset neurological diseases. Round-table panel Studies of decision-making in the settings of pregnancy, adoption and predictive genetic testing.	COMET 2020 – Communication, Medicine and Ethics Conference Department of Communication and Psychology - Aalborg University (Aalborg, Denmark)
2019/11/13	Living with or at risk for Machado-Joseph disease in a community of the Tagus valley, Portugal: making decisions about pre-symptomatic testing and reproductive risks	MJD International Research Conference: Strengthening Families & Communities through Science & Practice MJD Foundation (Washington DC, United States)
2019/10/03	Genetic counselling in Portugal: enduring challenges, emerging research	II World Congress of Genetic Counselling (Cambridge, United Kingdom)
2018/11/13	At the interface between human and forensic genetics: some of the questionable uses of DNA outside health care and research	EXCHANGE International Conference “Contemporary Challenges to Forensic Genetics in Society (Braga, Portugal)
2018/05/02	Processes of communication about genetic risks within families affected by late onset neurological diseases	i3S post-doc seminar series i3S (Porto, Portugal)
2017/03/08	From older to younger: Intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy	UnderInvestigation: Psicologia & Educação@ua Universidade de Aveiro (Aveiro, Portugal)
2016/09/25	Apoio psicológico e familiar em casos de ataxias hereditárias	I Encontro Ibérico de ataxias hereditárias Hospitais da Universidade de Coimbra (Coimbra, Portugal)
2016/09	Regional and professional developments and challenges in genomics. Member of a discussion roundtable	“Who has the right to my genome: ELSI challenges of citizen participation and public private partnerships in genomics”, COST IS1303 CHIP ME Annual Conference. (Leuven, Belgium)
2016/06	Twenty years’ experience conducting presymptomatic testing for late-onset neurological diseases: what have we learned?	ESHG Conference (Barcelona, Spain)
2015/12/07	Genetic counselling, nondirectiveness and the communication of genetic risks within the family	Seminar Department of Public Health, Uppsala University (Uppsala, Sweden)
2015/03	Communication of genetic risk information within families: how can systemic family therapy be of help?	XXIII IFTA World Family Therapy Congress (Kuala Lumpur, Malaysia)
2011/11	Empowering staff in dementia long-term care: a psychoeducational approach	39th Congress of European Association of Geriatric Psychiatry (Porto, Portugal)
2010/09	Moving beyond training: a psychoeducational program for formal caregivers of elderly with dementia	20th Alzheimer Europe Conference - Facing dementia together (Luxembourg)
2010/03	ProFamilies – Dementia: An Integrated Approach for Elderly People with Dementia and Families	XVIII World International Family Therapy Association (Buenos Aires, Argentina)
2010/01	Programa de Apoio a Cuidadores Formais e Idosos com Demência	Congresso de Psiquiatria e Medicina Geral e Familiar e VII Encontro de Psicogeriatria e Cuidados de Saúde Primários (Lisboa, Portugal)
2009/06	Risco genético em cancros hereditários: intervenção psicoeducativa multifamiliar	XXXII Congreso Interamericano de Psicología (Ciudad Guatemala, Guatemala)
2006/09	Programa de apoio psico-educativo a doentes oncológicos	V Congreso Iberoamericano de Psicología Clínica y de la Salud (San José, Costa Rica)
2005/06	Psycho-educational intervention in multi-families discussion groups: the case of oncology patients	AFTA-IFTA International Conference on Family Therapy (Washington DC, United States)
2005/03	Intervención psicoeducativa familiar en enfermidades cronicas	X Congreso Internacional de Educación Familiar (Las Palmas, Spain)

Supervision

	Thesis Title Role	Degree Subject (Type) Institution / Organization
2024/09/15 - Current	Nondirectiveness and genetic counselling: a scoping review of the literature Co-supervisor	Health Psychology (Master) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2024/09/15 - Current	Coping strategies in individuals who tested positive in predictive genetic testing for severe hereditary conditions Co-supervisor	Clinical Psychology (Master) Universidade do Porto Faculdade de Psicologia e de Ciências da Educação, Portugal
2024/09/09 - Current	Grief and anticipatory loss in individuals who tested positive in predictive testing for severe hereditary conditions Co-supervisor	Clinical Psychology (Master) Universidade do Porto Faculdade de Psicologia e de Ciências da Educação, Portugal
2023/05/01 - Current	Deliberating genetic risks: Decision-making and disclosure from genetic counseling to the family Co-supervisor	Universidade de Aveiro Departamento de Educação e Psicologia, Portugal Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2023/04/15 - Current	Disclosure of genetic risk information to family members: influencing factors in the decision-making process Co-supervisor	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal Universidade do Porto Centro de Psicologia, Portugal
2023/06/01 - 2027/05/31	Parent-children communication about genetic risks: towards a youth-friendly approach in genetic counselling Co-supervisor	Universidade de Aveiro Departamento de Educação e Psicologia, Portugal Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2023/09/15 - 2024/07/31	Experiences of stigmatization and its impacts on families with hereditary diseases: An exploratory mixed-method study Co-supervisor	Systemic Clinical and Heath Psychology (Master) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2023/09/15 - 2024/07/31	Experiences of stigmatization within families with hereditary diseases: An exploratory study Co-supervisor	Systemic Clinical and Health Psychology (Master) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2023/09/15 - 2024/06/30	Disclosure of information about risks for hereditary conditions: Attitudes of the general population in Portugal Co-supervisor	Health Psychology (Master) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2022/09/15 - 2023/07/31	Experiences of caregivers of people with hereditary ataxia with an online narrative support group intervention Supervisor	Systemic Clinical and Health Psychology (Master) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2022/09/15 - 2023/07/31	Perceptions of caregivers of people with hereditary ataxia participating in an online narrative support group intervention about their family functioning using SCORE-15 Supervisor	Systemic Clinical and Health Psychology (Master) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2022/09/15 - 2023/06/30	Preferences of people with inherited genetic conditions and family members toward informing relatives of genetic risk Co-supervisor	Health Psychology (Master) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2018/04 - 2023/01/31	Bwtween generations: intra- and intergenerational transmission of health behaviours in families with hereditary conditions Co-supervisor	Gerontology (PhD) Centro de Investigação em Tecnologias e Serviços de Saúde, Portugal
2021/10/01 - 2022/06/30	Exploring personal, family and community experiences with Machado-Joseph disease in São Miguel, the Azores Co-supervisor	Health Psychology and Neuropsychology (Master) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2016/09/01 - 2017/07/31	Metáforas associadas a viver com doença crónica: o caso da diabetes tipo II Co-supervisor	Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2016/09/01 - 2017/07/31	O papel da geração mais velha na promoção de comportamentos de saúde em famílias com paramiloidose Co-supervisor	Gerontology (Master) Universidade de Aveiro Departamento de Ciências Médicas, Portugal
2016/09/01 - 2017/07/31	Secondment in Psychology at CGPP-i3s Supervisor	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal

Event organisation

	Event name Type of event (Role)	Institution / Organization
2024/06/02 - Current	Workshop on “Family communication of genetic information”, ESHG Conference, June, Berlin (2024/06/01 - 2024/06/04) Conference (Co-organisor)	European Society of Human Genetics, Austria
2022/11/29 - Current	Symposium “Testes genéticos em contexto: pessoas, famílias, sociedade”, CGPP-IBMC, i3S, November, Porto (2022/11/29) Symposium (Member of the Organising Committee)	Centro de Genética Preditiva e Preventiva, Portugal

Event participation

	Activity description Type of event	Event name Institution / Organization
2024/06/15 - Current	Presentation of the oral communication " Psychosocial research with people living with Huntington's disease and family members in Portugal" Meeting	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2022/11/29 - Current	Speaker at the round-table entitled "Genetic Counselling and Psychosocial Genetics" Symposium	Symposium "Genetic Tests in Context: Persons, Families, Society" Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2021/06/18 - Current	Invited discussant at the seminar "Family psychosocial adjustment to hereditary cancer" Seminar	Universidade do Porto Faculdade de Psicologia e de Ciências da Educação, Portugal
2021/02/06 - Current	Presentation of research results. Decisões sobre o teste preditivo e sobre a comunicação do risco genético na família ("Decisions about predictive testing and about communicating genetic risk information in the family"). Other	Huntington Café. Associação Portuguesa de Doentes de Huntington, Portugal
2022/01/17 - 2022/01/19	Discussant at the round-table "The educated patient", workshop "Triggers and trends in science communication" Workshop	"Triggers and trends in science communication" Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2019/12 - 2019/12	Comentator to the film "The imortal life of Henrietta Lacks". Other	CineISPUP Universidade do Porto Instituto de Saúde Pública, Portugal
2019/10/04 - 2019/10/04	Moderator to the panel "Research into the Counselling Process". Conference	II International Conference on Genetic Counselling Wellcome Sanger Institute, United Kingdom
2019/01/15 - 2019/01/16	SIENNA Foresight Workshop Genomics: Future impacts and ethical issues. Invited panel of multidisciplinary experts aiming at discussing the ethical, social and legal aspects of genomic technologies. Organised by the EU-funded project "SIENNA, Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact". Workshop
2019/01 - 2019/01	Comentator to the documentary film “The Code”. Other	CineISPUP Universidade do Porto Instituto de Saúde Pública, Portugal

Jury of academic degree

	Topic Role	Candidate name (Type of degree) Institution / Organization
2023/04/10	"Everyday Executive Function in Parkinson and Huntington Disease: a novel ecological approach" (Thesis) Main arguer	Filipa Lima Ramos Santos Júlio (PhD) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2020/01/25	"Intervening with vulnerable families: Photovoice as collaborative tool" Thesis Member	Ana Sofia Rodrigues (PhD) Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2019/01	"People-centred policy for data governance in gamete donation: access to information by gamete donors and recipients" (Thesis) Main arguer	Tiago Maia (Master) Universidade do Porto Instituto de Saúde Pública, Portugal
2017/11	"Enabling factors of the Community Genetic Health Worker Program in the Fiji Islands" (Thesis) Main arguer	Jyotishna Mudaliar (Master) Universidade do Porto Instituto de Saúde Pública, Portugal
2015/06	"O impacto da doença pediátrica na família: revisão sistemática da literatura" (Thesis) Main arguer	Ana Nunes (Master) Instituto Superior Miguel Torga, Portugal
2014/09	"O impacto da dor crónica no sistema familiar: análise de conteúdo da perspectiva dos médicos" (Thesis) Main arguer	Daniela Miranda (Master) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2014	"Impacto da dor crónica no sistema familiar: a perspectiva de psicólogos clínicos e investigadores" (Thesis) Main arguer	Filipa Beirão (Master) Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal

Association member

	Society Organization name	Role
2014 - Current	European Huntington's Disease Network	Member of the subgroup "Family communication"

Committee member

	Activity description Role	Institution / Organization
2024/07/01 - Current	Member of Scientific Programme Committee, Advisory Committee on the Ethical Legal and Psychosocial Issues of Genomics Member	European Society of Human Genetics, Austria
2023/03/15 - Current	Committee for Ethical and Responsible Conduct of Research (CECRI) Member	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal
2022/02/15 - Current	Ethical, Legal, Psychosocial Aspects in Genomics (ELPAG) Advisory Committee of the European Society of Human Genetics. Development of proposals, and score abstracts, of the ELPAG stream of the ESHG annual conference. Member	European Society of Human Genetics, Austria
2015/06 - Current	Public and Professional Policies Committee of the European Society of Human Genetics. Policy work around genetic testing and counselling. Member	European Society of Human Genetics, Austria

Consulting

	Activity description	Institution / Organization
2022/09/01 - 2023/03/01	Commissioned expert by the Portuguese Psychological Association - Strategic Roadmap for the implementation of Genomic Medicine in the Portuguese NHS

Course / Discipline taught

	Academic session	Degree Subject (Type)	Institution / Organization
2023/03/27 - Current	Abordagens Psicoeducativas em Genética Psicossocial	Genética Psicossocial II (Mestrado)	Universidade do Porto Instituto de Ciências Biomédicas Abel Salazar, Portugal
2022/05/20 - Current	Aspectos psicológicos associados às doenças genéticas ("Psychological aspects of genetics diseases")	(Mestrado integrado)	Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2021/05/10 - Current	Aspectos psicológicos associados às doenças genéticas ("Psychological aspects of genetics diseases")	Condições Crónicas de Doença e Cuidados Paliativos: Intervenção Psicoterapêutica Sistémica (Mestrado integrado)	Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2020/11/24 - 2020/11/24	"The communication of genetic information within the family". MSc in Genetic counselling, UC "Psychosocial genetics I".	(Mestrado)	Universidade do Porto Instituto de Ciências Biomédicas Abel Salazar, Portugal
2020/11/19 - 2020/11/19	"Communicating genetic information with families - ethical perspectives". MSc in Genetic Counselling, UC "Bioethics and genetics".	MSC in genetic counselling (Mestrado)	Universidade do Porto Instituto de Ciências Biomédicas Abel Salazar, Portugal
2020/05/18 - 2020/05/18	Aspectos psicológicos associados às doenças genéticas (Psychological aspects of genetic diseases)	(Mestrado)	Universidade de Coimbra Faculdade de Psicologia e de Ciências da Educação, Portugal
2019/05 - 2019/05	Aspectos éticos e sociais do uso de informação genética fora dos contextos da saúde e de investigação	Forensic Genetics (Mestrado)	Universidade do Porto Faculdade de Ciências, Portugal
2018/04 - 2018/04	“Grupos de discussão multifamiliares em famílias com doenças genéticas hereditárias”	(Mestrado integrado)	Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2017/04 - 2017/04	“Grupos de discussão multifamiliares em famílias com doenças genéticas hereditárias”	(Mestrado integrado)	Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2016/04 - 2016/04	“Grupos de discussão multifamiliares em famílias com doenças genéticas hereditárias”	(Mestrado integrado)	Universidade de Aveiro Departamento de Educação e Psicologia, Portugal
2016/02 - 2016/02	“Aspectos psicossociais dos cancros hereditários”	(Doutoramento)	Universidade de Coimbra Faculdade de Medicina, Portugal
2015/02 - 2015/02	“Aspectos psicossociais dos cancros hereditários”	(Doutoramento)	Universidade de Coimbra Faculdade de Medicina, Portugal
2014/04 - 2014/04	“Aspectos familiares na promoção da saúde em famílias com doenças genéticas hereditárias”	(Mestrado integrado)	Universidade de Aveiro Departamento de Ciências Médicas, Portugal
2013/04 - 2013/04	“Aspectos familiares na promoção da saúde em famílias com doenças genéticas hereditárias”	(Mestrado integrado)	Universidade de Aveiro Departamento de Ciências Médicas, Portugal
2013/02 - 2013/02	“Grupos de discussão multifamiliar na doença crónica”	(Doutoramento)	Universidade de Aveiro Departamento de Ciências Médicas, Portugal

Interview (newspaper / magazine)

	Activity description	Newspaper / Forum
2018/11/03	Participation in interview “Doenças hereditárias: a ditadura do sangue”, "Expresso", 03.11.2019.	Expresso

Interview (tv / radio show)

	Program	Topic
2020/02/12 - Current	Short interview on TV about genetic testing and counselling for rare diseases.	Genetic testing and genetic counselling for rare diseases.

Journal scientific committee

	Journal title (ISSN)	Publisher
2024/09/01 - Current	Annals of Human Genetics (1469-1809)	Wiley
2021/06/01 - Current	Journal of Community Genetics (1868- 6001)	Springer

Other jury / evaluation

	Activity description	Institution / Organization
2024/04/01 - 2024/04/30	Reviewer research grant proposals	Agence nationale de la recherche, France
2023/06/01 - 2023/06/30	Reviewer research grant proposals	ZonMw, Netherlands
2021/04/01 - 2022/04/01	Reviewer postdoctoral grant proposals	Fonds Wetenschappelijk Onderzoek Vlaanderen, Belgium

Scientific expedition

	Activity description	Institution / Organization
2021/10/01 - Current	Participant researcher within the Educational Programme "Ciência e tal". Science engagement with secondary school students.	Universidade do Porto Instituto de Investigação e Inovação em Saúde, Portugal

Distinctions

Award

2006	Dr. Rocha Alves Prize on "Research and intervention in oncology" Liga Portuguesa Contra o Cancro, Portugal

Other distinction

2024	Visiting researcher grant Forskningsradet for halsa arbetsliv och valfard, Sweden
2018	Short-term scientific mission COST Action INTERFASOL IS1311 European Commission Seventh Framework Programme for Research and Technological Development, Belgium
2018	Individual Call to Scientific Employment Stimulus (CEECIND/02615/2017) Fundação para a Ciência e a Tecnologia, Portugal
2016	Short-Term Scientific Mission, COST Action IS1303 (CHIP ME) European Commission Seventh Framework Programme for Research and Technological Development, Belgium
2015	Short-Term Scientific Mission, COST Action IS1303 (CHIP ME) European Commission Seventh Framework Programme for Research and Technological Development, Belgium
2014	Fellowship ESHG to attend the Basic and advanced course on genetic counselling European Society of Human Genetics, Austria
2012	Postdoctoral fellowship (SFRH/BPD/88647/2012) Fundação para a Ciência e a Tecnologia, Portugal
2007	Doctoral fellowship (SFRH/BD/38773/2007) Fundação para a Ciência e a Tecnologia, Portugal
2001	Socrates-Erasmus mobility grant European Commission, Belgium