{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"submitter":["McConkie-Rosell A"],"funding":["NHGRI NIH HHS","NIH HHS"],"pagination":["59-70"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC8664895"],"repository":["biostudies-literature"],"omics_type":["Unknown"],"volume":["31(1)"],"pubmed_abstract":["The Genome Empowerment Scale (GEmS), developed as a research tool, assesses perspectives of parents of children with undiagnosed disorders about to undergo exome or genome sequencing related to the process of empowerment. We defined genomic healthcare empowerment as follows: perceived ability to understand and seek new information related to the genomic sequencing, manage emotions related to the diagnostic process and outcomes, and utilize genomic sequencing information to the betterment of the individual/child and family. The GEmS consists of four scales, two are primarily emotion-focused (Meaning of a Diagnosis, and Emotional Management of the Process) and two are action-oriented (Seeking Information and Support, and Implications and Planning). The purpose of this research was to provide a strategy for interpreting results from the GEmS and present illustrative cases. These illustrations should serve to facilitate use of the GEmS in the clinical and research arena, particularly with respect to guiding genetic counseling processes for parents of children with undiagnosed conditions."],"journal":["Journal of genetic counseling"],"pubmed_title":["Clinical application of a scale to assess genomic healthcare empowerment (GEmS): Process and illustrative case examples."],"pmcid":["PMC8664895"],"funding_grant_id":["UO1HG007703","F32 HG000130","U01 HG007703","U01 HG007672","U01HG007672"],"pubmed_authors":["Dasari S","Liu XZ","Emrick LT","Solem E","Wener M","Gutierrez I","Murdock DR","Novacic D","Malicdan MCV","Sutton S","Lincoln SA","Cunningham M","Amendola L","Butte MJ","Walker M","Stoler JM","Lawrence Merritt J","Bennet J","Bonner D","Moretti PM","Woods JD","Cooper CM","Loo SK","Smith EC","Hahn S","Christopher Lau C","Coakley TR","Fieg EL","Papp JC","Acosta MT","Sessions Cole F","Kelley EG","Chang TCP","Posey JE","Lanza IR","Yu G","Silverman EK","Forghani I","Stong N","Dayal JG","Jarvik GP","Vogel TP","Adams DR","Deardorff M","Gropman AL","Duncan L","Krakow D","Zhao C","Byers P","Martin MG","Azamian MS","Bale J","Fisher PG","Fogel BL","Renteria G","Groden CA","Sinsheimer JS","Lanpher BC","Scott DA","McCray AT","Phillips JA","Whitlock J","Findley LC","Newman JH","Sweetser DA","Koziura M","Adam M","Alvey J","Tran AA","Macnamara EF","Carrasquillo O","Signer R","Cobban LA","Nickerson D","Berg-Rood B","Pusey BN","Marth G","Cogan JD","Schaechter J","Wang LK","Nicholas SK","Bivona S","Tabor HK","Sharma P","Wenger T","Bejerano G","Estwick T","Dhar SU","Jarvik J","Craigen WJ","Might M","Boyd B","Kennedy J","Isasi R","Tucker BM","Wangler MF","Karaviti L","Pak S","Zuchner S","Bayrak-Toydemir P","Hisama FM","Martin BA","Hayes N","Longo N","Rosenfeld JA","Jamal F","Mao R","Liu P","Sullivan J","Mamounas LA","Wallace S","Wambach J","Lalani SR","Dorrani N","Parker NH","Blue E","Palmer CGS","Saporta M","Sillari CH","Orengo JP","Thorson W","Telischi F","Wheeler MT","Hing A","Horike-Pyne M","Undiagnosed Disease Network","Martinez-Agosto JA","Bamshad M","Tekin M","Eng CM","D'Souza P","Hom J","Hooper SR","Kravets E","Fresard L","Carl Pallais J","Draper DD","Nelson SF","Smith KS","Sybert V","Krasnewich DM","Walsh CA","Bohnsack J","Urv TK","Tifft CJ","Wan J","Baldridge D","Lewis RA","Holm IA","Sacco R","Solnica-Krezel L","Clark GD","Markello TC","McCauley J","McCormack CE","Rodan LH","Byrd WE","Kohane IS","Nieves-Rodriguez S","Beck A","Perry KW","Samson SL","Potocki L","Grajewski A","Crouse AB","Glass I","Wegner D","Ron Scott C","Rives L","Coggins M","Andrews A","Kiley D","Kohler JN","Lee H","Shashi V","Behrens E","Nath A","Botto L","Ashley EA","Davids M","Bacino CA","Chanprasert S","Majcherska MM","Alejandro ME","Eckstein DJ","Barbouth D","Briere LC","Fernandez L","Ferreira C","Quinlan A","Krier JB","Ruzhnikov M","Agrawal PB","Maravilla K","Beggs AH","Marwaha S","Nakano-Okuno M","Huang Y","Bonnenmann C","Hamid R","Zastrow DB","Reuter CM","Dai H","Spillmann RC","Raja AN","Sisco K","Sun A","Vanderver A","Balasubramanyam A","Burrage LC","Morimoto M","Shin J","Schoch K","Baker E","Brown G","Marom R","Manolio TA","Toro C","Pace L","Lee BH","Chao HT","Esteves C","Huang A","Oglesbee D","Hanchard NA","Velinder M","Yang J","McConkie-Rosell A","Morava E","Maduro VV","Yamamoto S","Viskochil D","Carey J","Goldman AM","Sampson JB","Levitt R","Bademci G","Falk M","High F","Bernstein JA","Berry GT","Bican A","Burke EA","Brokamp E","Goldstein DB","Lam B","LeBlanc K","Lam C","Walley NM","Robertson AK","Hassey K","Cope H","Ward PA","Earl D","McGee E","MacRae CA","Mefford H","Sullivan JA","Doherty D","Mirzaa G","Rosenwasser N","Maas RL","Colley HA","Gahl WA","Loscalzo J","Mulvihill JJ","Schedl T","Jayadev S","Rao DA","Dipple K","Mak B","Wolfe LA","Korrick S","Raskind W","Dell'Angelica EC","Johnston JM","Tan QK","Godfrey RA","Westerfield M","Douine ED","Wahl CE","Golden-Grant K","Tamburro CP"],"additional_accession":[]},"is_claimable":false,"name":"Clinical application of a scale to assess genomic healthcare empowerment (GEmS): Process and illustrative case examples.","description":"The Genome Empowerment Scale (GEmS), developed as a research tool, assesses perspectives of parents of children with undiagnosed disorders about to undergo exome or genome sequencing related to the process of empowerment. We defined genomic healthcare empowerment as follows: perceived ability to understand and seek new information related to the genomic sequencing, manage emotions related to the diagnostic process and outcomes, and utilize genomic sequencing information to the betterment of the individual/child and family. The GEmS consists of four scales, two are primarily emotion-focused (Meaning of a Diagnosis, and Emotional Management of the Process) and two are action-oriented (Seeking Information and Support, and Implications and Planning). The purpose of this research was to provide a strategy for interpreting results from the GEmS and present illustrative cases. These illustrations should serve to facilitate use of the GEmS in the clinical and research arena, particularly with respect to guiding genetic counseling processes for parents of children with undiagnosed conditions.","dates":{"release":"2022-01-01T00:00:00Z","publication":"2022 Feb","modification":"2025-04-26T13:24:13.604Z","creation":"2025-04-06T14:13:53.663Z"},"accession":"S-EPMC8664895","cross_references":{"pubmed":["34115423"],"doi":["10.1002/jgc4.1451"]}}