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For over twenty-five years, Genetic Alliance has promoted the research of medical and social solutions to genetic diseases. Below is a list of publications about and by staff at Genetic Alliance.

Articles By Genetic Alliance Staff

2021 | 2020 | 2019 | 2018 | 2017 | 2016 |2015 |2014 |2013 | 2012 | 2011 | 2010 | 2009 | 2008

20072006 | 2005 | 2004 | 2003 | 2002 | 2001 |2000 | 1990s | 1980s-1970s


Eric L Eisenstein, Meredith N Zozus, Sharon F Terry, Linda Davidson-Ray, Kevin J Anstrom. Ascertaining Nonfatal Endpoints in Clinical Trials: Central Adjudication Versus Patient Insurance Claims. Ther Innov Regul Sci. 2021 Jul 6. doi: 10.1007/s43441-021-00321-9. PMID: 34228318

Coetzee T, Ball M, Boutin M, Bronson A, Dexter DT, English RA, Furlong P, Goodman AD, Grossman C, Hernandez AF, Hinners JE, Hudson L, Kennedy A, Marchisotto MJ, Myers E, Nowell WB, Nosek BA, Sherer T, Shore C, Sim I, Smolensky L, Williams C, Wood J, Terry SF, Matrisian L. Data Sharing Goals for Nonprofit Funders of Clinical Trials. J Particip Med. 2021 Mar 29;13(1):e23011. doi: 10.2196/23011. PMID: 33779573

Kieran C O'Doherty, Mahsa Shabani, Edward S Dove, Heidi Beate Bentzen, Pascal Borry, Michael M Burgess, Don Chalmers, Jantina De Vries, Lisa Eckstein, Stephanie M Fullerton, Eric Juengst, Kazuto Kato, Jane Kaye, Bartha Maria Knoppers, Barbara A Koenig, Spero M Manson, Kimberlyn M McGrail, Amy L McGuire, Eric M Meslin, Dianne Nicol, Barbara Prainsack, Sharon F Terry, Adrian Thorogood, Wylie Burke. Toward better governance of human genomic data. Nat Genet. 2021 Jan;53(1):2-8. doi: 10.1038/s41588-020-00742-6. PMID: 33414545


Sharon F Terry. The Human Face of ABCC6. FEBS Lett. 2020 Dec;594(23):4151-4157. doi: 10.1002/1873-3468.14002. PMID: 33211322

McQuillen M, Terry SF. Genetic and Disability Discrimination During COVID-19. Genet Test Mol Biomarkers. 2020 Dec;24(12):759-760. doi: 10.1089/gtmb.2020.29059.ste. Epub 2020 Nov 24. PMID: 33237840

Anderson K, Terry SF. Please Wait for the Host to Start This Meeting: A Push for H.R. 3235 Amid COVID-19. Genet Test Mol Biomarkers. 2020 Nov;24(11):689-691. doi: 10.1089/gtmb.2020.29058.sjt. Epub 2020 Oct 14. PMID: 33054381

Angrist M, Barrangou R, Baylis F, Brokowski C, Burgio G, Caplan A, Chapman CR, Church GM, Cook-Deegan R, Cwik B, Doudna JA, Evans JH, Greely HT, Hercher L, Hurlbut JB, Hynes RO, Ishii T, Kiani S, Lee LH, Levrier G, Liu DR, Lunshof JE, Macintosh KL, Mathews DJH, Meslin EM, Mills PHR, Montoliu L, Musunuru K, Nicol D, O'Neill H, Qiu R, Ranisch R, Sherkow JS, Soni S, Terry S, Topol E, Williamson R, Zhang F, Davies K. Reactions to the National Academies/Royal Society Report on Heritable Human Genome Editing. CRISPR J. 2020 Oct;3(5):332-349. doi: 10.1089/ PMID: 33095048

Duong C, Terry S. Beyond Cultural Competency Training and Diversity and Inclusion Statements: The Quality of Genetic Testing for Asian Americans. Genet Test Mol Biomarkers. 2020 Oct;24(10):613-615. doi: 10.1089/gtmb.2020.29057.sjt. Epub 2020 Sep 14. PMID: 2924609

Labs J, Terry S. Privacy in the Coronavirus Era. Genet Test Mol Biomarkers. 2020 Sep;24(9):535-536. doi: 10.1089/gtmb.2020.29055.sjt. Epub 2020 Jul 14. PMID: 32677850

Terry SF. Let's Keep the Sharing Alive. Genet Test Mol Biomarkers. 2020 May;24(5):229. doi: 10.1089/gtmb.2020.29052.sjt.Epub 2020 Apr 22. PMID: 32319813

Terry SF, Caffet M. Free at Last? Discussing the Future of Forensic Genealogy. Genet Test Mol Biomarkers. 2020 Apr;24(4):171-172. doi: 10.1089/gtmb.2020.29051.sjt. Epub 2020 Mar 27. PMID: 32216641

Wolf SM, Ossorio PN, Berry SA, Greely HT, McGuire AL, Penny MA, Terry SF; LawSeq Framework Task Force. Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics. J Law Med Ethics. 2020 Mar;48(1):69-86. doi: 10.1177/1073110520916996. PMID: 32342790

Sim I, Stebbins M, Bierer BE, Butte AJ, Drazen J, Dzau V, Hernandez AF, Krumholz HM, Lo B, Munos B, Perakslis E, Rockhold F, Ross JS, Terry SF, Yamamoto KR, Zarin DA, Li R. Time for NIH to lead on data sharing. Science. 2020 Mar 20;367(6484):1308-1309. doi: 10.1126/science.aba4456. PMID: 32193313


Lebwohl M, Rose S, Fuchs W, Terry SF. Reply to: "Comment on 'Magnesium supplementation in the treatment of pseudoxanthoma elasticum: Is magnesium oxide the best choice?'" J Am Acad Dermatol. 2019 Nov;81(5):e137. doi: 10.1016/j.jaad.2019.07.003. Epub 2019 Jul 4. PMID: 31279807

Davis C, Terry SF. The Role of Patient Advocacy During a Time of Surprise Billing Genet Test Mol Biomarkers. 2019 Oct;23(10):703-705. doi: 10.1089/gtmb.2019.29049.sjt. Epub 2019 Sep 30. PMID: 31566416

Kain R, Kahn S, Thompson D, Lewis D, Barker D, Bustamante C, Cabou C, Casdin A, Garcia F, Paragas J, Patrinos A, Rajagopal A, Terry SF, Van Zeeland A, Yu E, Erlich Y, Barry D. Database shares that transform research subjects into partners. Nat Biotechnol. 2019 Oct;37(10):1112-1115. doi: 10.1038/s41587-019-0278-9. PMID: 31537916

McKeague M, Terry SF. Let's Talk About Sex: Understanding Gender Beyond Genetics. Genet Test Mol Biomarkers. 2019 Sep;23(9):599-600. doi: 10.1089/gtmb.2019.29048.sjt. Epub 2019 Aug 13. PMID: 31408365

Krokosky A, Terry SF. So What Does That Test Result Mean? Genetic Counselors in the Trenches. Genet Test Mol Biomarkers. 2019 Aug;23(8):507-508. doi: 10.1089/gtmb.2019.29047.sjt. Epub 2019 Jul 19. PMID: 31329493

Rose S, On SJ, Fuchs W, Chen C, Phelps R, Kornreich D, Haddican M, Singer G, Wong V, Baum D, Vekaria A, Gagliotti M, Huang R, Suárez-Fariñas M, Terry SF, Lebwohl M. Magnesium supplementation in the treatment of pseudoxanthoma elasticum: A randomized trial. J Am Acad Dermatol. 2019 Jul;81(1):263-265. doi: 10.1016/j.jaad.2019.02.055. Epub 2019 Feb 28. PMID: 30826287

Wurst T, Terry S. More Than Meets the Eye: Our Microbiome May Be Key to Decreasing Infection. Genet Test Mol Biomarkers. 2019 May;23(5):297-298. doi: 10.1089/gtmb.2019.29046.sjt.PMID: 31050571

David KL, Best RG, Brenman LM, Bush L, Deignan JL, Flannery D, Hoffman JD, Holm I, Miller DT, O'Leary J, Pyeritz RE; ACMG Social Ethical Legal Issues Committee. Patient re-contact after revision of genomic test results: points to consider-a statement of the American College of Medical Genetics and Genomics (ACMG). Genet Med. 2019 Apr;21(4):769-771. doi: 10.1038/s41436-018-0391-z. Epub 2018 Dec 22. PMID: 30578420

Terry SF. Add Water and Serve: Liquid Biopsies Making Waves. Genet Test Mol Biomarkers.. 2019 Apr;23(4):233-234. doi: 10.1089/gtmb.2019.29045.sjt. Epub 2019 Mar 28. PMID: 30920323

McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Kahn SD, Knoppers BM, Koenig BA, Lambright JM, Mattison JE, O'Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AM, Watson MS, Wilbanks JT, Cook-Deegan R. Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. J Law Med Ethics. 2019 Mar;47(1):12-20. doi: 10.1177/1073110519840480. PMID: 30994067

Lander ES, Baylis F, Zhang F, Charpentier E, Berg P, Bourgain C, Friedrich B, Joung JK, Li J, Liu D, Naldini L, Nie JB, Qiu R, Schoene-Seifert B, Shao F, Terry S, Wei W, Winnacker EL. Adopt a moratorium on heritable genome editing. Nature. 2019 Mar;567(7747):165-168. doi: 10.1038/d41586-019-00726-5. PMID: 30867611

Terry SF, Westreich AM. A Role for Storytelling in Improving Consumer Understanding of Genetic Testing. Genet Test Mol Biomarkers. 2019 Jan;23(1):1-2. doi: 10.1089/gtmb.2018.29041.sjt. Epub 2018 Dec 28. PMID: 30592631


Rich K, Terry SF. CRISPR-Cas9: New Heights, New Hesitations. Genet Test Mol Biomarkers. 2018 Nov;22(11):635-636. doi: 10.1089/gtmb.2018.0267. Epub 2018 Nov 15. PMID: 30452298

Terry SF. To Test or Not to Test? Gen Test Mol Biomarkers. 2018 Oct;22(10):583-584. doi: 10.1089/gtmb.2018.0254. PMID: 30339502

Evans A, Bonhomme N, Goodman A, Terry SF. Newborn screening and health communications. Genet Test Mol Biomarkers. 2018 Sep;22(9):507-508. doi: 10.1089/gtmb.2018.0234. PMID: 30235037

Oliphant EN, Terry SF. Reuniting families using genetic testing? Gen Test Mol Biomarkers. 2018 Aug;22(8):453-455. doi: 10.1089/gtmb.2018.0201. PMID: 30117776

Goldenberg AJ, Lloyd-Puryear M, Brosco JP, Therrell B, Bush L, Berry S, Brower A, Bonhomme N, Bowdish B, Chrysler D, Clarke A, Crawford T, Goldman E, Hiner S, Howell RR, Orren D, Wilfond BS, Watson M. Bioethics and Legal Workgroup of the Newborn Screening Translational Research Network. Including ELSI research questions in newborn screening pilot studies. Genet Med. 2018 Aug 13. doi: 10.1038/s41436-018-0101-x

Lewis MA, Bonhomme N, Bloss CS. A new era, new strategies: education and communication strategies to manage greater access to genomic information. Hastings Cent Rep. 2018 Jul;48 Suppl 2:S25-S27. doi: 10.1002/hast.880

Rich K, Terry SF. The price of precision: genetic testing and drug costs in America. Genet Test Mol Biomarkers. 2018 Jul;22(7):403-404. doi: 10.1089/gtmb.2018.0169. PMID 30020834

Raman SR, Curtis LH, Temple R, Andersson T, Ezekowitz J, Ford I, James S, Marsolo K, Mirhaji P, Rocca M, Rothman RL, Sethuraman B, Stockbridge N, Terry SF, Wasserman S, Peterson ED, Hernandez AF. Leveraging electronic health records for clinical research. American Heart Journal. 2018 Apr. 30. doi:

Vasilevsky NA, Foster ED, Engelstad ME, Carmody L, Might M, Chambers C, Dawkins HJS, Lewis J, Della Rocca MG, Snyder M, Boerkoel CF, Rath A, Terry SF, Kent A, Searle B, Baynam G, Jones E, Gavin P, Bamshad M, Chong J, Groza T, Adams D, Resnick AC, Heath AP, Mungall C, Holm IA, Rageth K, Brownstein CA, Shefchek K, McMurry JA, Robinson RN, Köhler S, Haendel MA. Plain-language medical vocabulary on precision diagnosis. Nature Genetics 50. 2018 Apr 9;474–476 (2018). doi:10.1038/s41588-018-0096-x.

Wurst T., Terry SF. Beyond recommendation: requiring returning findings to research participants. Genet Test Mol Biomarkers. 2018 Mar;22(3):141-142. doi: 10.1089/gtmb.2018.0052. PMID: 29565740

Rahimzadeh V, Schickhardt C, Knoppers BM, Sénécal K, Vears DF, Fernandez CV, Pfister S, Plon S, Terry SF, Williams J, Williams MS, Cornel M, Friedman JM. Key implications of data sharing in pediatric genomics. JAMA Pediatr. 2018 Mar 19. doi: 10.1001/jamapediatrics.2017.5500. PMID: 29554172

Tung, J. Y., R. J. Shaw, J. M. Hagenkord, M. Hackmann, M. Muller, S. H. Beachy, V. M. Pratt, S. F. Terry, A. K. Cashion, and G. S. Ginsburg. Accelerating precision health by applying the lessons learned from direct-to-consumer genomics to digital health technologies. NAM Perspectives. 2018 Mar 19. Discussion Paper, National Academy of Medicine, Washington, DC. doi: 10.31478/201803c

Kaye J, Terry SF, Juengst E, Coy S, Harris JR, Chalmers D, Dove ES, Budin-Ljøsne I, Adebamowo C, Ogbe E, Bezuidenhout L, Morrison M, Minion JT, Murtagh MJ, Minari J, Teare H, Isasi R, Kato K, Rial-Sebbag E, Marshall P, Koenig B, Cambon-Thomsen A. Including all voices in international data-sharing governance. Hum Genomics. 2018 Mar 7;12(1):13. doi: 10.1186/s40246-018-0143-9. PMID: 29514717

Terry SF, Runkle D, Wicks P. Patient- or participant-generated registries. Addendum to registries for evaluating patient outcomes: a user’s guide, third edition. Agency for Healthcare Research and Quality (US); 2018 Feb. Report No.: 17(18)-EHC017-EF

Mena C, Terry S. No Seat at the Recommendations Table? Genet Test Mol Biomarkers. 2018 Jan;22(1):3-4. doi: 10.1089/gtmb.2017.29039.sjt. PMID: 29345983


Baynam G, Bowman F, Lister K, Walker CE, Pachter N, Goldblatt J, Boycott KM, Gahl WA, Kosaki K, Adachi T, Ishii K, Mahede T, McKenzie F, Townshend S, Slee J, Kiraly-Borri C, Vasudevan A, Hawkins A, Broley S, Schofield L, Verhoef H, Groza T, Zankl A, Robinson PN, Haendel M, Brudno M, Mattick JS, Dinger ME, Roscioli T, Cowley MJ, Olry A, Hanauer M, Alkuraya FS, Taruscio D, Posada de la Paz M, Lochmüller H, Bushby K, Thompson R, Hedley V, Lasko P, Mina K, Beilby J, Tifft C, Davis M, Laing NG, Julkowska D, Le Cam Y, Terry SF, Kaufmann P, Eerola I, Norstedt I, Rath A, Suematsu M, Groft SC, Austin CP, Draghia-Akli R, Weeramanthri TS, Molster C, Dawkins HJS. Improved diagnosis and care for rare diseases through implementation of precision public health framework. Adv Exp Med Biol. . 2017;1031:55-94. doi: 10.1007/978-3-319-67144-4_4. PMID: 29214566

Wagner JA, Dahlem AM, Hudson LD, Terry SF, Altman RB, Gilliland CT, DeFeo C, Austin CP. Application of a dynamic map for learning, communicating, navigating, and improving therapeutic development. Clin Transl Sci. 2017 Dec 22. doi: 10.1111/cts.12531. PMID: 29271559

Terry SF. A crack in the wall of competition: will compassion prevail? Genet Test Mol Biomarkers. 2017 Nov;21(11):635-636. doi: 10.1089/gtmb.2017.29037.sjt. PMID: 29154720

Terry SF. The International Rare Diseases Research Consortium announces new vision and goals. Genet Test Mol Biomarkers. 2017 Oct;21(10):578-579. doi: 10.1089/gtmb.2017.29035.sjt. PMID: 29045173

Deverka PA, Majumder MA, Villanueva AG, Anderson M, Bakker AC, Bardill J, Boerwinkle E, Bubela T, Evans BJ, Garrison NA, Gibbs RA, Gentleman R, Glazer D, Goldstein MM, Greely H, Harris C, Knoppers BM, Koenig BA, Kohane IS, La Rosa S, Mattison J, O'Donnell CJ, Rai AK, Rehm HL, Rodriguez LL, Shelton R, Simoncelli T, Terry SF, Watson MS, Wilbanks J, Cook-Deegan R, McGuire AL. Creating a data resource: what will it take to build a medical information commons? Genome Medicine. 2017 Sep 22;9(1):84. doi: 10.1186/s13073-017-0476-3. PMID: 28938910

Terry SF. Research for the people by the people. Genet Test Mol Biomarkers. 2017 Sep;21(9):521-522. PMID: 28915083

Austin CP, Cutillo CM, Lau LP, Jonker AH, Rath A, Julkowska D, Thomson D, Terry SF, de Montleau B, Ardigò D, Hivert V, Boycott KM, Baynam G, Kaufmann P, Taruscio D, Lochmüller H, Suematsu M, Incerti C, Draghia-Akli R, Norstedt I, Wang L, Dawkins HJ. International Rare Diseases Research Consortium (IRDiRC). Future of rare diseases research 2017-2027: an IRDiRC Perspective. Clin Transl Sci. 2017 Aug 10. doi: 10.1111/cts.12500. PMID: 28796445

Terry SF. An evidence framework for genetic testing. Genet Test Mol Biomarkers. 2017 Jul;21(7):407-408. doi: 10.1089/gtmb.2017.29032.sjt. PMID: 28715288

Moitra K, Garcia S, Jaldin M, Etoundi C, Cooper D, Roland A, Dixon P, Reyes S, Turan S, Terry SF, Dean M. ABCC6 and Pseudoxanthoma Elasticum: The face of a rare disease from genetics to advocacy. Int J Mol Sci. 2017 Jul 11;18(7). doi: 10.3390/ijms18071488. PMID: 28696355

Mena C, Terry SF. A new day dawns for direct-to-consumer marketing. Genet Test Mol Biomarkers. 2017 May;21(5):273-274. doi: 10.1089/gtmb.2017.29031.sjt. PMID: 28498774

Uitto J, Li Q, van de Wetering K, Váradi A, Terry SF. Insights Into Pathomechanisms and Treatment Development in Heritable Ectopic Mineralization Disorders: Summary of the PXE International Biennial Research Symposium-2016. J Invest Dermatol. 2017 Apr;137(4):790-795. doi: 10.1016/j.jid.2016.12.014. PMID: 28340679

Dharssi S, Wong-Rieger D, Harold M, Terry SF. Review of 11 national policies for rare diseases in the context of key patient needs. Orphanet Journal of Rare Diseases. 2017 Mar 31. doi: 10.1186/s13023-017-0618-0

Terry SF. Turning Toward Participants in Biobanking. Genet Test Mol Biomarkers. 2017 Mar;21(3):132-133. doi: 10.1089/gtmb.2017.29029.sjt. PMID: 28306400

Lambertson KF, Terry SF. Data Sharing as the New Norm: What About the People Part? Genet Test Mol Biomarkers. 2017 Feb;21(2):63-65. doi: 10.1089/gtmb.2017.29026.sjt. PMID: 28207325

Phillips M, Grant T, Giampietro P, Bodurtha J, Valdez R, Maiese DR, Hendershot, T, Terry SF, Hamilton CM. PhenX measures for phenotyping rare genetic conditions. Genet Med. 2017 Jan 12. doi: 10.1038/gim.2016.199. PubMed PMID: 28079902

Terry SF. The study is open: participants are now recruiting investigators. Sci Transl Med. 2017 Jan 4;9(371). pii: eaaf1001. doi: 10.1126/scitranslmed.aaf. PMID: 28053150


Krumholz HM, Bourne PE, Kuntz RE, Paz HL, Terry SF, Waldstreicher J. Data Acquisition, Curation, and Use For a Continuously Learning Health System: A Vital Direction for Health and Health Care. National Academy of Medicine. 2016, Sept;26. doi:10.1001/jama.2016.12537. PMID:27668668

Oyama S, Terry SF. Epigenetics and Racial Health Inequities. Genet Test Mol Biomarkers. Sept 2016, 20(9): 483-484. doi: 10.1089/gtmb.2016.29021.sjt

Muller M, Terry SF. Rising Concern Regarding Pregnant Women and Zika Virus. Genet Test Mol Biomarkers. Aug 2016, 20(8): 411-412. doi:10.1089/gtmb.2016.29018.sjt

Oliphant E, Terry SF. GINA and ADA: New Rule Seriously Dents Previous Protections. Genet Test Mol Biomarkers. July 2016, 20(7): 339-340. doi:10.1089/gtmb.2016.29017.sjt

Terry SF. Bipartisan Genetic Research Privacy Protection Act Introduced. Genet Test Mol Biomarkers. June 2016, 20(6): 274-275. doi:10.1089/gtmb.2016.29016.sjt.

Terry SF. New Institute of Medicine Report on Molecular Biomarkers. Genet Test Mol Biomarkers. May 2016, 20(5): 221-222. doi:10.1089/gtmb.2016.29014.sjt.

Terry SF. The Day the President of the United States Said "That Data is Mine" Genet Test Mol Biomarkers. April 2016, 20(4): 165-166. doi:10.1089/gtmb.2016.29013.sjt.

Baker, Dixie B.; Kaye, Jane; and Terry, Sharon F. (2016)  "Privacy, Fairness, and Respect for Individuals," eGEMS (Generating Evidence & Methods to improve patient outcomes): Vol. 4: Iss. 2, Article 7. doi: 10.13063 /2327-9214.1207

Terry SF. (2016) Life as a numerator: Putting the person in personal genomics. Appl. Transl. Genomic.

Lambertson K, Terry SF. Genetic Testing and the Workplace. Genet Test Mol Biomarkers. March 2016, 20(3): 103-104. doi:10.1089/gtmb.2016.29011.sjt.

Terry PF, Terry SF. To Pay or Not to Pay? Is That the Question? Genet Test  Mol Biomarkers. February 2016, 20(2): 53-54. doi:10.1089/gtmb.2016.2901..

Delaney SK, Hultner ML, Jacob HJ, Ledbetter DH, McCarthy JJ, Ball M, Beckman KB, Belmont JW, Bloss CS, Christman MF, Cosgrove A, Damiani SA, Danis T, Delledonne M, Dougherty MJ, Dudley JT, Faucett WA, Friedman JR, Haase DH, Hays TS, Heilsberg S, Huber J, Kaminsky L, Ledbetter N, Lee WH, Levin E, Libiger O, Linderman M, Love RL, Magnus DC, Martland A, McClure SL, Megill SE, Messier H, Nussbaum RL, Palaniappan L, Patay BA, Popovich BW, Quackenbush J, Savant MJ, Su MM, Terry SF, Tucker S, Wong WT, Green RC. Toward clinical genomics in everyday medicine: perspectives and recommendations, Expert Review of Molecular Diagnostics. 2016 Jan 25. PMID: 26810587


Balaji D, Terry SF. Benefits and Risks of Sharing Genomic InformationGenet Test Mol Biomarkers. 2015 Nov 20. PMID: 26588592

Lutins E, Terry SF. NIST RM 8398: Standardizing DiscoveriesGenet Test Mol Biomarkers. 2015 Nov;19(11):589-590. PMID: 26502080

Terry SF, Patrick-Lake B. Hearing voices: FDA seeks advice from patients. Sci Transl Med. 2015 Nov 11;7(313):313ed12. doi: 10.1126/scitranslmed.aad5866. PMID: 26560354

Philippakis AA, Azzariti DR, Beltran S, Brookes AJ, Brownstein CA, Brudno M, Brunner HG, Buske OJ, Carey K, Doll C, Dumitriu S, Dyke SO, den Dunnen JT, Firth HV, Gibbs RA, Girdea M, Gonzalez M, Haendel MA, Hamosh A, Holm IA, Huang L, Hurles ME, Hutton B, Krier JB, Misyura A, Mungall CJ, Paschall J, Paten B, Robinson PN, Schiettecatte F, Sobreira NL, Swaminathan GJ, Taschner PE, Terry SF, Washington NL, Züchner S, Boycott KM, Rehm HL. The Matchmaker Exchange: A Platform for Rare Disease Gene Discovery. Hum Mutat. 2015 Oct;36(10):915-21. doi: 10.1002/humu.22858. PMID: 26295439

Lambertson KF, Damiani SA, Might M, Shelton R, Terry SF. Participant-Driven Matchmaking in the Genomic Era. Hum Mutat. 2015 Oct;36(10):965-73. doi: 10.1002/humu.22852. Epub 2015 Aug 27. PMID: 26252162

Caldwell L, Terry SF. 21st-Century Healthcare Policy and the Regulation of Laboratory-Developed TestsGenet Test Mol Biomarkers.2015 Sept;19(9):467-8. PMID: 26368293

Ellis K, Terry SF. Dangerous Liaisons: Connecting CRISPR/Cas9 to Clinical ScienceGenet Test Mol Biomarkers. 2015 Aug;19(8):409-10. PMID: 26225797

David SP, Johnson SG, Berger AC, Feero WG, Terry SF, Green LA, Phillips RL Jr, Ginsburg GS. Making Personalized Health Care Even More Personalized: Insights From Activities of the IOM Genomics Roundtable. Ann Fam Med. 2015 Jul-Aug;13(4):373-80. doi: 10.1370/afm.1772. PubMed PMID: 26195686; PMCID: PMC4508182

Schulz R, Terry SF. The science, applications, and ethical concerns surrounding low copy number DNA analysisGenet Test Mol Biomarkers. 2015 Jun;19(6):281-2. PMID: 26053787

Lutins E, Terry SF. Will the wall come tumbling down?  Genet Test Mol Biomarkers. 2015 May;19(5):226-7. PMID: 25969965

Kringen MK, Stormo C, Berg JP, Terry SF, Vocke CM, Rizvi S, Hendig D, Piehler AP. Copy number variation in the ATP-binding cassette transporter ABCC6 gene and ABCC6 pseudogenes in patients with pseudoxanthoma elasticum. Mol Genet Genomic Med. 2015 May;3(3):233-7. doi: 10.1002/mgg3.137. Epub 2015 Mar 8. PMID: 26029710; PMCID: PMC4444165

Terry SF. Participating in next generation sequencingGenet Test Mol Biomarkers. 2015 Apr;19(4):174. PMID: 25849720

Terry SF. Obama’s Precision Medicine InitiativeGenet Test Mol Biomarkers. 2015 Mar;19(3):113-4. PMID: 25751403

Falk MJ, Shen L, Gonzalez M, Leipzig J, Lott MT, Stassen AP, Diroma MA, Navarro-Gomez D, Yeske P, Bai R, Boles RG, Brilhante V, Ralph D, DaRe JT, Shelton R, Terry SF, Zhang Z, Copeland WC, van Oven M, Prokisch H, Wallace DC, Attimonelli M, Krotoski D, Zuchner S, Gai X. Mitochondrial Disease Sequence Data Resource (MSeqDR): A global grass-roots consortium to facilitate deposition, curation, annotation, and integrated analysis of genomic data for the mitochondrial disease clinical and research communities. Mol Genet Metab. 2015 Mar;114(3):388-96. PMID: 25542617

Li AM, Terry SF. Linking personal health data to genomic researchGenet Test Mol Biomarkers. 2015 Jan;19(1):1-2. PMID: 25549296

Schully SD, Lam TK, Dotson WD, Chang CQ, Aronson N, Birkeland ML, Brewster SJ, Boccia S, Buchanan AH, Calonge N, Calzone K, Djulbegovic B, Goddard KA, Klein RD, Klein TE, Lau J, Long R, Lyman GH, Morgan RL, Palmer CG, Relling MV, Rubinstein WS, Swen JJ, Terry SF, Williams MS, Khoury MJ. Evidence synthesis and guideline development in genomic medicine: current status and future prospects. Genet Med. 2015 Jan;17(1):63-7. PMID: 24946156

Li Q, Sundberg JP, Levine MA, Terry SF, Uitto J. The effects of bisphosphonates on ectopic soft tissue mineralization caused by mutations in the ABCC6 gene. Cell Cycle. 2015;14(7):1082-9. PMID: 25607347.


Commins J, Terry SF. Moving forward: putting genetic testing to use. Genet Test Mol Biomarkers. 2014 Oct;18(10):663-4. doi: 10.1089/gtmb.2014.1559. PMID: 25197960.

Meade C, Bonhomme, NF. Newborn screening: adapting to advancements in whole-genome sequencing. Genet Test Mol Biomarkers. 2014 Sept;18(9):597-8. doi: 10.1089/gtmb.2014.1558. PMID: 25099518

Rangi SK, Terry SF. Genetic testing and native peoples: the call for community-based participatory research. Genet Test Mol Biomarkers. 2014 Aug;18(8):531-2. doi: 10.1089/gtmb.2014.1557. PMID: 25089910

Gerdes M, Terry SF. Five principles: returning genetic testing results to research participants. Genet Test Mol Biomarkers. 2014 Jul;18(7):453-4 doi: 10.1089/gtmb.2014.1556. PMID: 25014338

Terry SF. The global alliance for genomics and health. Genet Test Mol Biomarkers. 2014 Jun;18(6):375-6. doi: 10.1089/gtmb.2014.1555. PMID: 24896853

Mukherjee S, Terry SF. Companions: tests and drug for better healthcare. Genet Test Mol Biomarkers. 2014 May;18(5):287-8. doi: 10.1089/gtmb.2014.1554. PMID: 24786598

Terry SF. Sharing your thoughts about sharing clinical trial data. Genet Test Mol Biomarkers. 2014 Apr;18(4):221-2. doi: 10.1089/gtmb.2014.1553. PMID: 24689892

Terry SF. A call for participatory oversight. Genet Test Mol Biomarkers. 2014 Feb;18(2):71-2. doi: 10.1089/gtmb.2014.1552. PMID: 24506510

Lambertson K, Terry SF. Free The Data. Genet Test Mol Biomarkers. 2014 Jan;18(1):1-2. doi: 10.1089/gtmb.2014.1551. PMID: 24401097


Stein DT, Terry SF. Reforming biobank consent policy: a necessary move away from broad consent toward dynamic consent. Genet Test Mol Biomarkers. 2013 Dec;17(12):855-6. PMID: 24283583

Saulsberry K, and Terry SF. The need to build trust: a perspective on disparities in genetic testing. Genet Test Mol Biomarkers. 2013 Sep;17(9):647-8. PMID: 24000888

Nguyen S, Terry SF. Free the data: the end of genetic data as trade secrets. Genet Test Mol Biomarkers. 2013 Aug;17(8):579-80. PMID: 23905579

Terry SF, Let's try it: me for you. Genet Test Mol Biomarkers. 2013 Jul;17(7):513-4. PMID: 23819845

Terry SF. Disease advocacy organizations catalyze translational research. Front Genet. 2013 Jun 4;4:1-5. doi:10.3389/fgene.2013.00101. PMID: 23761807

Terry SF. Don't just invite us to the table: authentic community engagement. Genet Test Mol Biomarkers. 2013 Jun;17(6):443-5. PMID: 23721344

Terry SF, Bonhomme N. Nothing About Us Without Us: Guidelines for Genetic Testing. Genet Test Mol Biomarkers. 2013 May;17(5):357-8. PMID: 23611249

Terry SF, Shelton R, Biggers G, Baker D, Edwards K. The haystack is made of needlesGenet Test Mol Biomarkers. 2013 Mar;17(3):175-7. doi: 10.1089/gtmb.2012.1542. PMID: 23428177

Jahnke C, Terry SF. Test now, share now. Genet Test Mol Biomarkers. 2013 Feb;17(2):89-90. doi: 10.1089/gtmb.2012.1541. PMID: 23336572

Gonzalez M, Terry SF . Sharing clinical research data: perspectives on an IOM workshop. Genet Test Mol Biomarkers. 2013 Jan;17(1):1-2. PMID: 23237620


Jahnke CM, Stark E, Terry SF, Bonhomme N. Is this a genesis in prenatal testing: genomic knowledge, risk or benefit? Genet Test Mol Biomarkers. 2012 Dec;16(12):1347-8. PMID: 23153002

Wilber M, Terry SF. From base pairs to bedside...and beyond. Genet Test Mol Biomarkers. 2012 Nov;16(11):1255-6. PMID: 23101591

Estomin A, Edelson V. Tackling the transition: How do you prepare your child (and you!) for his or her foray into the adult world? EP Magazine. 2012 Oct:11-13.

Thongkham D, Terry SF. Companion diagnostics: the next step in personalized clinical care. Genet Test and Mol Biomarkers. 2012 Oct;16(10):1155-6. PMID: 23057592.

Copperman C, Terry SF. Beyond genetic tests and biomarkers: what about therapeutic misconception? Genet Test Mol Biomarkers. 2012 Sept;16(9):999-1000. PMID: 22963603.

Murza T, Stark E, Edelson V. Should I consider genetic testing for my child? EP Magazine. 2012 Sept:11-13.

Copperman C, Thongkham D, Terry SF. Are they really incidental after all? Genet Test Mol Biomarkers. 2012 Aug;16(8):833-4. PMID: 22928695

Kubi, R, Stark E, Bonhomme N. A landmark year for newborn screening. EP Magazine. 2012 Aug:27-28.

Silva LF, Terry SF. Not just trials and tribulations-we need results! Genet Test Mol Biomarkers. 2012 Jul;16(7):649-50. PMID: 22799609

Horn EJ, Terry SF. Consumer perceptions of genetic testing. Genet Test and Mol Biomarkers. 2012 June;16(6):463-4. PMID: 22715991

Horn EJ, Terry SF. Permission to share biospecimens. Genet Test Mol Biomarkers. 2012 May;16(5):311-2. PMID: 22621385

Michelson A, Vocke C, Terry SF, Edelson V. From back to school blues to back to school do's (and don'ts). EP Magazine. 2012 May;12-14.

Horn EJ, Terry SF. Genetic testing registry launched. Genet Test Mol Biomarkers. 2012 Apr;16(4):227-8. PMID: 22515266

Esnayra J, Terry SF, Edelson V. Psychiatric service dog partnershipEP Magazine. 2012 Apr:40-41.

Albuquerque W, Horn EJ, Terry SF. Beast of Burden? Comments on the NIH Genetic Testing Registry. Genet Test Mol Biomarkers. 2012 Mar;16(3):155-6. PMID: 22420527.

Horn EJ, Terry SF. Precision medicine: generating real-world evidence for companion diagnostics. Genet Test Mol Biomarkers. 2012 Feb;16(2):75-6. PMID: 22335828.

O'Connor K, Edelson V, Terry SF. The need for better health and genetics literacy. EP Magazine. 2012 Feb:52-53.

Horn EJ, Terry SF. Regulating genetic tests: issues that guide policy decisions. Genet Test Mol Biomarkers. 2012 Jan;16(1):1-2. PMID: 22276932

Howell RR, Terry SF, Tait VF, Olney R, Hinton CF, Grosse S, Glidewell J. et al. CDC grand rounds: Newborn screening and improved outcomes. MMWR: Morbidity & Mortality Weekly Report. 2012 June;61(21):390-393.

Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, Kanellopoulou N, Winter SF. From patients to partners: Participant-centric initiatives in biomedical research. Nature Reviews Genetics. 2012 May;13:371-376.

Landy DC, Brinich MA, Colten ME, Horn EJ, Terry SF, Sharp RR. How disease advocacy organizations participate in clinical research: A survey of genetic organizations. Genetics in Medicine. 2012 Feb;14:223-228.

Moore PJ, Gratzer W, Lieber C, Edelson V, O'Leary J, Terry SF. Iona college community center family health history project: Lessons learned from student focus groups. Journal of Genetic Counseling. 2012 Feb;21(1):127-135.

Schmidt J, Castellanos-Brown K, Childress S, Bonhomme N, Oktay J, Terry SF, Greene C, et al. The impact of false-positive newborn screening results on families: A qualitative study. Genetics in Medicine. 2012 Jan;14(1):76-80.

Terry SF. The tension between policy and practice in returning research results and incidental findings in genomic biobank research. Minnesota Journal of Law, Science & Technology. 2012; 13(2):691.

Terry SF, Christensen KD, Metosky S, Rudofsky G, Deignan KP, Martinez, H,  Citrin T, et al. Community engagement about genetic variation research. Population Health Management. 2012 Apr;15(2):78-89. doi: 10.1089/pop.2011.0013.


Chandrasek N, Edelson V, Terry SF. Whence come treatments for genetic disorders? EP Magazine. 2011 Dec:51-52.

Horn EJ, Edwards K, Terry SF. Engaging research participants and building trust. Genet Test Mol Biomarkers. 2011 Dec;15(12):839-40. PMID: 22181985

Horn EJ, Baxter K, O'Leary J, Terry SF. Exploring priorities for public health genomics. Genet Test Mol Biomarkers. 2011 Nov;15(11):741-2. PMID: 22092011

Palmer A, Edelson V,  Krokosky A. A peek into the past can reveal A lot about your future. EP Magazine. 2011 Nov:46-47.

Baxter K, Terry SF. International rare disease research consortium commits to aggressive goals. Genet Test Mol Biomarkers. 2011 Jul-Aug;15(7-8):465. PMID: 21762001

Baxter K, Terry SF. Come together, right now! Genet Test Mol Biomarkers. 2011 Oct;15(10):665-6. PMID: 21992487

Petruniak M, Krokosky A, Terry SF. The genetic information nondiscrimination act (GINA): A civil rights victory. EP Magazine. 2011 Oct:15.

Baxter K, Krokosky A, Terry SF. Risky business: the need for hypothesis-generating research. Genet Test Mol Biomarkers. 2011 Sep;15(9):577-8. PMID: 21905842

Petruniak M, Krokosky A, Terry, SF. Social media provides tools for discovery: How to find value in social networking. EP Magazine. 2011 Sept:50-52.

Mariani D, Bonhomme N, Terry SF. Newborn screening: A crucial first step. EP Magazine. 2011 Aug:18.

Krokosky A, Terry SF. Making sense of your genes: Tools and individuals that can help. EP Magazine. 2011 July:27.

Chappelle A, Krokosky A, Terry SF. Suffering from information overload? Know when to trust it or trash it. EP Magazine. 2011 June:30-31.

Bonhomme N, Cornell A, Freeman D, Simon L. 2011 Public Perspectives and Preferences on Newborn Screening: A Consumer Engagement Initiative. Journal of Obstetric, Gynecologic, & Neonatal Nursing. 2011 June;40(s1):S109. DOI: 10.1111/j.1552-6909.2011.01243_29.x.

Field A, Baxter K, Terry SF. Recommendations of the European Society of Human Genetics on genetic testing for common disorders. Genet Test Mol Biomarkers. 2011 May;15(5):291-292. PMID: 21561286

Krokosky A, Terry SF. Ten tips for making an impact on policy issues. EP Magazine. 2011 May:26-27.

Field A, Baxter K, Terry SF. From bench to practice to population health impact: barriers to realizing the public health and clinical promise of basic scientific discovery. Genet Test Mol Biomarkers. 2011 Apr;15(4):191-2. PMID: 21428744

Krokosky A, Terry SF. How does genetics fit in the field of disabilities? EP Magazine. 2011 Apr:34.

Yoo JY, Blum RR, Singer GK, Stern DK, Emanuel PO, Fuchs W, et al. A randomized controlled trial of oral phosphate binders in the treatment of pseudoxanthoma elasticum. Journal of the American Academy of Dermatology. 2011 Apr;65(2):341-8.

Baxter K, Field A, Terry SF. "Insufficient evidence" isn't sufficient anymore. Genet Test Mol Biomarkers. 2011 Mar;15(3):115-6. PMID: 21352088

Bercovitch L, Martin L, Chassaing N, Hefferon T W, Bessis D, Vanakker O, et al. Acquired pseudoxanthoma elasticum presenting after liver transplantation. The Journal of the American Academy of Dermatology. 2011 Mar;64(5):873-8

Field A, Krokosky A, Terry SF. Answering the hard questions: the Genetic Testing Registry and its request for information. Genet Test Mol Biomarkers. 2011 Jan-Feb;15(1-2):1-2. PMID: 21275651

O'Leary J, Edelson V, Gardner N, Gepp A, Kyler P, Moore P, Bowen D, et al. Community centered family health history: A customized approach to increased health communication and awareness. Progressive Community Health Partnerships. 2011;5(2):113-122.

Oster-Granite M, Parisi M, Abbeduto L, Berlin D, Bodine C, Bynum D, Maddox Y, et al.  Down syndrome: National conference on patient registries, research databases, and biobanks. Molecular Genetics and Metabolism. 2011 Sept/Oct;104(1-2):13-22.

Powell KP, Edelson V, O’Leary J, Christianson C, Henrich VC. Focus group evaluation of customized family health history education materials in A north carolina community. American Journal of Health Education. 2011 May/June;42(3):161-170.

Terry SF. Investing patients in the research and continuous improvement enterprise. Patients charting the course: Citizen engagement in the learning health system: Workshop summary. Institute of Medicine. 2011; 96-103.

Terry SF, Horn EJ, Scott J, Terry PJ. Genetic alliance registry and BioBank: A novel disease advocacy-driven research solution. Personalized Medicine. 2011 Mar;8(2):207-213.

Terry SF, Terry PF. Power to the people: participant ownership of clinical trial data. Sci Transl Med. 2011 Feb 9;3(69):69cm3. PMID: 21307299

Therrell Jr. BL, Hannon WH, Bailey Jr. DB, Goldman EB, Monaco J, Norgaard-Pederson B, Howell RR. Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening. Genetics in Medicine. 2011 July;13:621-624.

Uitto J, Bercovitch L, Terry SF, Terry PF. Pseudoxanthoma elasticum: Progress in diagnostics and research towards treatment : Summary of the 2010 PXE international research meeting. American Journal of Medical Genetics. 2011 July;155A(7):1517-1526.


Field A, Krokosky A, Terry SF. Direct-to-consumer marketing of genetic tests: access does not reflect clinical utility. Genet Test Mol Biomarkers. 2010 Dec;14(6):731-2. PMID:21158678

Krokosky A, Terry SF. International standard cytogenomic array consortium. Genet Test Mol Biomarkers. 2010 Oct;14(5):585. PMID: 20958093

Ritsick J, Terry SF. Not your grandfather's genetic testing oversight. Genet Test Mol Biomarkers. 2010 Aug;14(4):439. PMID: 20722465

Terry SF. FDA and CLIA oversight of advanced diagnostics and biomarker tests. Genet Test Mol Biomarkers. 2010 Jun;14(3):285-7. PMID: 20578940

Horn EJ, Mancuso T, Terry SF. Disease advocacy organization-initiated biorepositories and registries – an exploratory survey. (poster). ISBER 2010 Annual Meeting, Rotterdam, the Netherlands. 2010 May.

Terry SF. Genetic testing registry benefits. Genetic Engineering & Biotechnology News. 2010 May.

Terry SF. Standards for personalized medicine. Genet Test Mol Biomarkers. 2010 Apr;14(2):155-6. PMID: 20384455

Horn EJ, Landy DC, Sharp RR, Terry SF. Disease advocacy organizations may accelerate research through registries and biobanks. (poster). 2010 ACMG Annual Clinical Genetics Meeting, Albuquerque, NM. 2010 March. 

Sharp RR, Landy DC, Horn EJ, Terry SF. How disease-advocacy groups participate in clinical research: Results from a national survey of organizations for genetic disorders. (poster). 2010 ACMG Annual Clinical Genetics Meeting, Albuquerque, NM. 2010 March.

Terry SF.  Genetic testing and biomarkers in the new decade. Genet Test Mol Biomarkers. 2010 Feb;14(1):1-2. PMID: 20143909

Betsou F, Rimm DL, Watson PH, Womack C, Hubel A, Coleman RA, Elliott GD, et al. What are the biggest challenges and opportunities for biorepositories in the next three to five years? Biopreservation & Biobanking. 2010 June;8(2):81-8.

Colange N, Green NS, Rinaldo P, Lloyd-Puryear M, Dougherty D, Boyle C, Howell RR, et al. Commitee report: Method for evaluating conditions nominated for population-based screening of newborns and children. Genetics in Medicine. 2010 Mar;12:153-9.

Fullerton S, Anderson N, Guzauskas G, Freeman D, Fryer-Edwards K. Meeting the governance challenges of next-generation biorepository research. Science Translational Medicine. 2010 Jan;2(15).

Gitlin JM, Fischbeck K, Crawford T O, Cwik V, Fleischman A, Gonye K, Howell RR, et al. Carrier testing for spinal muscular dystrophy. Genetics in Medicine. 2010;12(10):621-2.

Horn EJ, Bialick JF, Terry SF. Landscape analysis of registries and biobanks: A tool for disease advocacy organizations to enhance translational research. Biopreservation & Biobanking. 2010 June;8(2):115-117.

Terry SF, Krokosky A. Rare conditions: Where do primary care and genetic diseases intersect? Journal of the American Academy of Physical Assistants. 2010;23(11):63-4.

Terry SF. Accelerate medical breakthroughs by ending disease earmarks. Nature Reviews Genetics. 2010 May;11:310-1.


Terry SF. Genetic information nondiscrimination act insurance protections issued. Genet Test Mol Biomarkers. 2009 Dec;13(6):709-10. PMID: 20001579

Weaver  M, Reed K, Chappelle A, Furlong P, Clapp K, Miller R, Terry SF. et al. Access to credible genetics resources: What does that mean for my practice?(poster). National Society of Genetic Counselors Annual Educational Conference. 2009 Nov.

Zonno K, Baker D, Chappelle A, Cornell A, Terry SF. Addressing issues of privacy and discrimination: Needs of genetic counselors. (poster). National Society of Genetic Counselors Annual Educational Conference. 2009 Nov.

Chappelle A, Bialick J, Terry SF. Resource repository: Revolutionizing access to information (poster). American Society of Human Genetics Annual Meeting. 2009 Oct.

Reed K, Weaver M, Chappelle A, Furlong P, Clapp K, Miller R, Terry SF, et al. Who said it? when did they say it? how did they know?: Deciding when to trust or trash genetics health information. (poster). 59th Annual Meeting of the American Society of Human Genetics. 2009 Oct.

Zonno KD, Terry SF. Collaboration: the foundation for success in rare disease genetic test development. Genet Test Mol Biomarkers. 2009 Oct;13(5):553-4. PMID: 19814612

Haga SB, Terry SF. Ensuring the safe use of genomic medicine in children. Clin Pediatr (Phila). 2009 Sep;48(7):703-8. PMID: 19448129

Zonno KD, Terry SF. Transparency, openness, and genetic testing. Genet Test Mol Biomarkers. 2009 Aug;13(4):433-4. PMID: 19663599

Zonno KD, Terry PF, Terry SF. A measure of truth in genetic testing. Genet Test Mol Biomarkers. 2009 Jun;13(3):285-6. PMID: 19473075

Zonno KD, Terry SF.  Registry of genetic tests: A critical stepping stone to improving the genetic testing system. Genet Test Mol Biomarkers. 2009 Apr;13(2):153-4. PMID: 19371210.

Cody JDM. An advocate's perspective on newborn screening policy. Ethics and newborn genetic screening: new technologies, new challenges. 2009;89-105.

Dressler LG, Terry SF. How will GINA influence participation in pharmacogenomics research and clinical testing? Clinical Pharmacology & Therapeutics. 2009;86(5):472-5.

Khoury JM, McBride CM, Schully SD, Loannidis J, Feero GW, Janssens CA, Xu JM, et al. The scientific foundation for personal genomics: Recommendations from a national institutes of health-centers for disease control and prevention multidisciplinary workshop. Genetics in Medicine. 2009 Aug;11(8):559-567.

Khoury JM, Feero GW, Reyes M, Citrin T, Freedman A, Leonard D, Terry SF. The genomic applications in practice and prevention network. Genetics in Medicine. 2009 July;11:488-494.

Terry SF. What do leaders of disease-specific advocacy organizations know about pharmacogenomics and biomarkers, anyway? Personalized Medicine. 2009;6(2):171-181.


Petruccio C, Shaw KRM, Boughman J, Fernandez C, Harlow I, Kruesi M, McKain F, et al. Healthy choices through family history: A community approach to family history awareness. Community Genetics. 2008 Aug;11:343-351.

Terry SF. Blood-strong love. Nature Genetics. 2008 July;40(7): 815-815. doi: 10.1038/ng0708-815.

Walport M, Graves DJ, Terry SF, Brown A, Sim I. Why does open access matter? PLoS Biology. 2008 Oct;6(10):2343-2343.

Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho MK, Clayton EW, Wilfond BS. Managing incidental findings in human subjects research: Analysis and recommendations. The Journal of Law, Medicine & Ethics. 2008;36(2):219-248.


Harvey EK, Fogel CE, Peyrot M, Christensen KD, Terry SF, McInerney JD. Providers' knowledge of genetics: A survey of 5915 individuals and families with genetic conditions. Genetics in Medicine. 2007 Feb;9(5):259-267.

Terry SF, Terry PF, Rauen K, Uitto J, Bercovitch L. Advocacy groups as research organizations: the PXE International example. Nat Rev Genet. 2007 Feb;8(2):157-64. PMID: 17230202


Terry SF, Terry PF. A consumer perspective on forensic DNA banking. J Law Med Ethics. 2006 Summer;34(2):408-14. PMID: 16789963


Terry SF.  In the public interest. College & Research Libraries News. 2005 July;66(7):522-25.


Beskow LM, Botkin JR, Daly M, Juengst ET, Lehmann LS, Merz JF, Burke W, et al. Ethical issues in identifying and recruiting participants for familial genetic research. American Journal of Medical Genetics Part A. 2004;130A(4):424-431.


Lin AE, Terry SF, Lerner B, Anderson R, Irons M. Participation by clinical geneticists in genetic advocacy groups. Am J Med Genet A. 2003 May 15;119A(1):89-92. PMID: 12707968

Terry SF. Learning genetics. Health Aff (Millwood). 2003 Sep-Oct;22(5):166-71. PMID: 14515892

Am J Bioeth. 2003 Summer;3(3):63-5. PMID: 14594500


Rothenberg KH, Terry SF. Human genetics. Before it's too late--addressing fear of genetic information. Science. 2002 Jul 12;297(5579):196-7. PMID: 12114610

Terry SF. Pharmacogenetic challenges. Health Aff (Millwood). 2002 Sep-Oct;21(5):307; discussion 307-8. PMID: 12224905


Beskow LM, Burke W, Merz JF, Barr PA, Terry SF, Penchaszadeh VB, Gostin LO, Gwinn M, Khoury MJ. Informed consent for population-based research involving genetics. JAMA. 2001 Nov 14;286(18):2315-21. PMID: 11710898

Le Saux O, Beck K, Sachsinger C, Silvestri C, Treiber C, Göring HHH, Boyd CD, et al. A spectrum of ABCC6 is responsible for pseudoxantoma elasticum. The American Journal of Human Genetic. 2001 Oct;69(4):749-764.

Terry SF, Boyd C. Researching the biology of PXE: partnering in the process. Am J Med Genet. 2001 Fall;106(3):177-84. PMID: 11778977

Terry PF, Terry SF. A consumer perspective on informed consent and third-party issuesJ Contin Educ Health Prof. 2001 Fall;21(4):256-64. PMID: 11803770

Terry SF, Pence GE. Should the federal government ban human cloning research? CQ Researcher. 2001 May;11(19):435.


Davidson ME, Weingarten K, Pollin TI, Wilson MA, Wilker N, Hsu N, Weiss JO. Consumer persepctives on genetic testing: Implications for building family-centered public policies. Families, Systems, & Health. 2000 June;18(2):217-235.

Lapham EV, Kozma C, Weiss JO, Benkendorf JL, Wilson MA. The gap between practice and genetics education of health professionals: HuGEM survey results. Genetics in Medicine. 2000 July/Aug;2:226-231.

Terry SF, Davidson ME. Empowering the Public to be Informed Consumers of Genetic Technologies and Services. Community Genet. 2000 Dec;3(3):148-50. PMID: 11831266

Weiss J, Davidson ME, Asch A. Objectives and activities of the genetic alliance. American Journal of Public Health. 2000 Sept;90(9):1477-1478.


Weiss, J. O. (1999). Nursing conference at johns hopkins on 19 september 1998 - the patient's perspective: A panel discussion. Biological Research for Nursing, 1(2), 128-132.

Weiss, J., Allen, L., Marche-Escola, S., Savoy, M., Rosemary, & Yang, S. (1998). Consumer perspectives on genetic testing, research and services for ethnoculturally diverse populations. Community Genetics, 1(3), 118-123.

Weiss, J. O., Kozma, C., & Lapham, E. V. (1997). Whom would you trust with your genetic information? American Journal of Human Genetics, 61(4), A24.

Lapham, E. V., Kozma, C., & Weiss, J. O. (1996). Genetic discrimination: Perspectives of consumers. Science, 274(5287), 621-624.

Weiss, J. O., & Mackta, J. S. (1996). Starting and sustaining genetic support groups. Johns Hopkins University Press.

Clayton, E. W., Steinberg, K. K., Khoury, M. J., Thomson, E., Andrews, L., Kahn, M. J. E., . . . Weiss, J. O. (1995). Informed consent for genetic research on stored tissue samples. Journal of the American Medical Association, 274(22), 1786-1792.

Mackta, J., & Weiss, J. O. (1994). The role of genetic support groups. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 23(6), 519-523.

Eunpu, D. L., & Weiss, J. O. (1993). The human genome project: A public forum. report on a model conference for genetics professionals and consumers. Journal of Genetic Counseling, 2(2), 93-113.

Weiss, J. O. (1992). Support groups for patients with genetic disorders and their families. Pediatric Clinics of North America, 39(1), 13-23.

Black, R. B., & Weiss, J. O. (1991). Chronic physical illness and disability. 137-164.

Black, R. B., & Weiss, J. O. (1990). Genetic support groups and social workers at partners. Health & Social Work, 15(2), 91-99.


Black, R. B., & Weiss, J. O. (1989). Genetic support groups in the delivery of comprehensive genetic services. The American Journal of Human Genetics, 45(4), 647-654.

Black, R. B., & Weiss, J. O. (1989). Gaps in service: Patient/family perspective. Maryland Medical Journal, 38(11), 933-937.

Weiss, J. O. (1989). Genetic support groups: A continuum of genetic services. Women & Health, 15(3), 37-53.

Black, R. B., & Weiss, J. O. (1988). A professional partnership with genetic support groups. American Journal of Medical Genetics, 29(1), 21-33.

Weiss, J. O., & Dickman, F. (1986). Genetics support groups: Volunteers and professionals as partners Proceedings of Conference Held in Washington, D.C., June 1985, Vol.22, Issue 2, Washington, D.C., 22(2).

Weiss, J. O. (1984). Genetic disorders and birth defects in families and society: Towards interdisciplinary understanding: Proceedings of conference held in Baltimore, MD., April, 1983.Baltimore, MD., 20.

Weiss, J. O. (1983). Genetic counseling. A social worker's view. Hospital Practice (Office Edition), 18(3), 40E.

Weiss, J. O. (1981). Psychosocial stress in genetic disorders: A guide for social workers. Social Work in Health Care, 6(4), 17-31.

Weiss, J. O. (1976). Social work and genetic counseling. Social Work in Health Care, 2(1), 5-12.




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