Where Ideas Grow
Álvaro Mendes
Associate Researcher

I am an assistant researcher at UnIGENe, IBMC – i3S. My research focuses on processes of family communication about genetic risks, genetic counselling, the roles of health care professionals in this context, and attitudes and preferences towards family communication practices and policies. I am also interested in broad psychosocial aspects of genetics, such as stigmatisation in relation to genetic disease, and ways to support individuals and families impacted by inherited genetic conditions. 

I am the principal investigator of a Portuguese Foundation for Science and Technology (FCT)-funded grant on how best to facilitate disclosure of risk information to patients’ relatives in genetic counselling (2023-2026). Previously, I was awarded with an FCT contract under the research-led “Stimulus for Scientific Employment” call. I contribute as country lead to the Wellcome Trust-funded project about global public attitudes on genomic information sharing ("Your DNA, Your Say"), and I also integrate the European Joint Programme on Rare Diseases-funded project "SAPIENCE - Social and Psychological Long-Term Consequences of NMDA Encephalitis". 

I completed a PhD in Health Sciences and Technology from the University of Aveiro and a Licentiate Degree in Clinical Psychology from the University of Coimbra. I am a chartered specialist in Clinical and Health Psychology, and an advanced specialist in Psychotherapy, by the Portuguese Psychologists' Association; and a certified Systemic Family and Couples Therapist by the Portuguese Society of Family Therapy. As a clinical psychologist, I integrate the multidisciplinary team of the pre-symptomatic testing protocol for late-onset neurological diseases at the Centre for Predictive and Preventive Genetics (CGPP-IBMC), the outpatient genetics clinic at i3S.

In parallel, I am an active member of the Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), for which I have co-authored various policy documents. I am also on the Genetic Counselling & Testing working group of the European Huntington Disease Network. I serve the i3S Committee for Ethical and Responsible Conduct of Research, and the Advisory Board of the Journal of Community Genetics.

I am a long-term collaborator of lay patient organizations. I regularly deliver teaching modules at Master and PhD programs in Health and Clinical Psychology and Genetic Counselling. I have concluded the co-supervision of 1 PhD thesis (FCT-funded) and 4 MSc dissertations; and I am currently co-supervising 3 PhD thesis (all FCT-funded) and 3 MSc dissertations on topics related to psychosocial aspects of genetics. 


Selected Publications

Guerra S., Oliveira C., Seidi C., Sousa L., Mendes Á.,
Multifamily interventions in the context of inherited genetic conditions: A scoping review. Journal of Family Therapy45(1):118-134, 2023. [Journal: Article] [IF: 1,8 (*)]
DOI: 10.1111/1467-6427.12424 SCOPUS: 85144122099.

Oliveira C.R., Mendes Á., Sequeiros J., Sousa L.,
From older to younger generations: Intergenerational transmission of health-related roles in families with Huntington's disease. Journal of Aging Studies61:, 2022. [Journal: Article] [IF: 2,7 (*)]
DOI: 10.1016/j.jaging.2022.101027 SCOPUS: 85129082862.

Couto D., Sousa L., Sequeiros J., Lima M., Mendes Á.,
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 Genetics13(4):459-461, 2022. [Journal: Article]
DOI: 10.1007/s12687-022-00602-2 SCOPUS: 85134477712.

Mendes Á., Sequeiros J., Clarke A.J.,
Between responsibility and desire: Accounts of reproductive decisions from those at risk for or affected by late-onset neurological diseases. Journal of Genetic Counseling30(5):1480-1490, 2021. [Journal: Article] [CI: 3] [IF: 2,7]
DOI: 10.1002/jgc4.1415 SCOPUS: 85104726157.

Milne R., Morley K.I., Almarri M.A., Anwer S., Atutornu J., Baranova E.E., Bevan P., Cerezo M., Cong Y., Costa A., Critchley C., Fernow J., Goodhand P., Hasan Q., Hibino A., Houeland G., Howard H.C., Hussain S.Z., Malmgren C.I., Izhevskaya V.L., Jedrzejak A., Jinhong C., Kimura M., Kleiderman E., Leach B., Liu K., Mascalzoni D., Mendes Á., Minari J., Nicol D., Niemiec E., Patch C., Pollard J., Prainsack B., Rivière M., Robarts L., Roberts J., Romano V., Sheerah H.A., Smith J., Soulier A., Steed C., Stefànsdóttir V., Tandre C., Thorogood A., Voigt T.H., Wang N., West A.V., Yoshizawa G., Middleton A.,
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries. Genome Medicine13(1):, 2021. [Journal: Article] [CI: 18] [IF: 15,3]
DOI: 10.1186/s13073-021-00903-0 SCOPUS: 85106873537.

Oliveira C.R., Mendes Á., Sequeiros J., Sousa L.,
Management of information within Portuguese families with Huntington disease: a transgenerational process for putting the puzzle together. European Journal of Human Genetics28(9):1210-1217, 2020. [Journal: Article] [CI: 5] [IF: 4,2]
DOI: 10.1038/s41431-020-0630-z SCOPUS: 85084155723.

Mendes Á., Paneque M., Clarke A., Sequeiros J.,
Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease. European Journal of Human Genetics27(3):353-359, 2019. [Journal: Article] [CI: 6] [IF: 3,7]
DOI: 10.1038/s41431-018-0308-y SCOPUS: 85058958698.

Mendes Á., Metcalfe A., Paneque M., Sousa L., Clarke A.J., Sequeiros J.,
Communication of Information about Genetic Risks: Putting Families at the Center. Family Process57(3):836-846, 2018. [Journal: Article] [CI: 29] [IF: 2,7]
DOI: 10.1111/famp.12306 SCOPUS: 85046602772.

Mendes Á., Sousa L., Sequeiros J., Clarke A.,
Discredited legacy: Stigma and familial amyloid polyneuropathy in Northwestern Portugal. Social Science and Medicine182:73-80, 2017. [Journal: Article] [CI: 13] [IF: 3]
DOI: 10.1016/j.socscimed.2017.04.026 SCOPUS: 85018469092.

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 Genetics24(3):315-325, 2016. [Journal: Article] [CI: 45] [IF: 4,3]
DOI: 10.1038/ejhg.2015.174 SCOPUS: 84958109101.