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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. Click on these links to download a PDF version of articles written by Genetic Alliance staff.

Articles By Genetic Alliance Staff

2016 |2015 |2014 |2013 | 2012 | 2011 | 2010 | 2009 | 2008 | 2007 | 2006 | 2005 | 
2004 | 2003 | 2002 | 2001 |2000 | 1990s | 1980s-1970s
 

2016

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: http://dx.doi.org/10.13063 /2327-9214.1207

Terry SF. (2016) Life as a numerator: Putting the person in personal genomics. Appl. Transl. Genomic.  http://dx.doi.org/10.1016/j.atg.2016.01.007

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.2016.29010.sjt.

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. PubMed PMID: 26810587

2015

Balaji D, Terry SF. Benefits and Risks of Sharing Genomic InformationGenet Test Mol Biomarkers. 2015 Nov 20. PubMed 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. PubMed 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. PubMed 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. PubMed 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; PubMed Central 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. PubMed PMID: 26029710; PubMed Central 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.

2014

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

2013

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

2012

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.

2011

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.

2010

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.

2009

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.

2008

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.

2007

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

2006

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

2005

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

2004

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.

2003

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

2002

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

2001

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.

2000

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.

1990s

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.

1980s-1970s

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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