International Society of Nurses in Genetics

2017 ISONG Congress Co-Chairs

Susan W. Wesmiller, PhD, RN


Deborah Tamura, MS, RN












2016 Congress Co-Chairs

Kim Subasic, PhD, RN

Tina Mladenka, DNP, APRN, CNP, WHNP

Susan W. Wesmiller, PhD, RN

Join us for the 2017 ISONG World Congress. Registration is Open!

Precision Nursing: Through Research, Education and Practice

Click here to register.

Click here for the Congress Program and Brochure.

We are delighted to announce that the 2017 ISONG World Congress on Nursing and Genomics will be held in Reston, Virginia USA.

The Congress venue will be at the four-diamond Hyatt Regency Reston Hotel which is located in Reston Town Center. Reston Town Center is a lovely community destination, offering more than 50 shops, 30 restaurants and an 11-screen cinema.

Reston, Virginia is conveniently located approximately 35 minutes outside of Washington D.C. The Hyatt Regency Reston offers a complimentary shuttle from the Washington Dulles Airport.

Please contact Linda Mason at ISONG Headquarters ( or +1 412-344-1414) if you have any questions.


Benjamin E. Berkman, JD, MPH
Deputy Director
NHGRI (National Human Genome Research Institute)
National Institutes of Health
Bethesda, Maryland USA

Benjamin D. Solomon, MD
Managing Director
Gathersburg, Maryland USA



Patricia A. Grady, PhD, RN, FAAN
National Institute of Nursing Research
National Institutes of Health
Bethesda, Maryland USA


David S. Wendler, MA, PhD
Head, Section on Research Ethics
Department of Bioethics Clinical Center
National Institutes of Health
Bethesda, Maryland USA

Sally Turner
CNS in Xeroderma Pigmentosum (Children)
St John's Institute of Dermatology
St Thomas' Hospital London, United Kingdom

Panel for P30 Grant

Lois A. Tully, PhD
Program Director
Office of Extramural Programs
National Institute of Nursing Research (NINR)
National Institutes of Health
Bethesda, Maryland USA

Precision in Symptom Self-Management (PriSSM): Looking through a Nursing Lens for the Future
Kathleen T. Hickey, EdD, FNP, ANP, FAHA, FAAN
Associate Professor
Columbia University School of Nursing
Nurse Practitioner
Division of Cardiology
Columbia University
New York, New York USA

Towards Oncology Precision Symptom Science: Phenotype-omics Association Studies in Clinically Relevant Animal Models
Susan G. Dorsey, PhD, RN, FAAN
Professor of Nursing
Chair, Department of Pain and Translational Symptom Science
Co-Director, UM Center to Advance Chronic Pain Research
University of Maryland Baltimore
Baltimore, Maryland USA

Achieving Precision Pain Management Through Nursing Research: A Trajectory
to the Bull’s-eye

Angela Starkweather, PhD, ACNP-BC, CNRN, FAAN
Director, Center for Advancement in Managing Pain
University of Connecticut
Storrs, Connecticut USA


Dennis Cheek, RN, PhD, FAHA
Texas Christian University
Harris College of Nursing and Health Sciences
Fort Worth, Texas USA


Allison A. Vorderstrasse, DNSc, APRN, CNE, FAAN
Associate Professor
Duke University School of Nursing
Durham, North Carolina USA



2016 ISONG World Congress

It was a wonderful Congress in Dun Laoghaire, Dublin, Ireland. Thank you to the 2016 ISONG Congress Planning Committee for their tireless efforts over the past year to deliver an exciting educational opportunity. Also, thank you to everyone who attended, the speakers and to all of the sponsors who supported the Congress.

The attendees enjoyed a welcome reception including entertainment from a traditional Irish dancing and music group. This was the perfect setting to meet with old friends and an opportunity to meet new friends before the program started.

The opening session was an ideal opportunity to recognize Dr. Heather Skirton on all of her contributions to ISONG as she embarks on a new journey in retirement. Sandy Daack Hirsch read quotes from the many ISONG members who have been inspired by Dr. Skirton over the years.

The Congress reviews are in and the some of the feedback includes:  
" All of the speakers were excellent and presented information that was applicable and relevant to everyone regardless of experience or research interest.”
“Loved it, loved it, loved it. The location and facilities were fantastic. The content of the sessions covered a wide range of topics and interests. Well done!!”
“Great International Poster and International Session.”
“This was my first time attending an ISONG meeting. I was impressed with the speaking and especially with the networking.”
“Each topic was of interest to me, if for no other reason than it is fascinating to see how people who work in disciplines across the world are putting G & G knowledge together. It is all a giant patchwork quilt, presently, but will develop into a conceptual whole for generations to come. Wow! : )”
“Hospitality was exceptional.”
“Very thought provoking questions were answered by most of the speakers.”
“Superb program, beautiful location and venue, very conducive to discussions and networking.”

Thank you to the ANCC for their generous support, Duke University and Duquesne University for sponsoring the Research Grants, Clemson University (they brought the most students!) for their continued support and to all of the sponsors who contributed to support this educational event!

There were lots of opportunities to network throughout the congress and some lucky attendees won some enviable items in the ever popular ISONG raffle! During the Awards Session we presented these prestigious awards:  

Founders Awards
Excellence in Genomic Nursing Education – Linda Ward
Excellence in Genomic Nursing Practice -Tammy McKamie
Excellence in Genomic Nursing Research – Laurie Badzek

President’s Awards
This is a discretionary award given by the president to ISONG members for going over and above in service during that year - Tina Mladenka and Kim Subasic

ISONG Nursing Research Grant Awards

Thomas Julian for his research grant proposal entitled: "A BioBehavioral Model of Serotonin Genetics Impulsivity and Opioid Addiction
Fay Wright for her research grant proposal entitled: Daily Diurnal Fatigue Variability and its Association with Genetic Expression of Inflammosome Pathways a Pilot Study

Congratulations to all of the award winners!

Also, we must once again thank the Congress Committee for their incredible efforts on this event!

Please join ISONG on Twitter and Facebook for more photos from the Congress.








Meet Our Speakers

Heather Skirton, PhD, MSc, RGN, QMW, PGC (HSCE), Dip Psychotherapeutic Counselling
Professor of Applied Health Genetics
Plymouth University
Chair of the European Board of Medical Genetics
Plymouth, United Kingdom

As Professor in Applied Health Genetics, Professor Skirton’s primary focus is research. She is currently leading the Gen-Equip project, funded via the Erasmus plus programme, to develop education in genetics for primary care practitioners across Europe.

Heather’s input into learning and teaching activities is connected mainly with genetics, research methods and ethics. She is also active in improving professional competence in genetic healthcare in Europe and is the inaugural Chair of the European Board of Medical Genetics. Click here to read more.

Alison Metcalfe, PhD, BSc, RN
Professor of Health Care Research
Associate Dean for Research
Florence Nightingale Faculty of Nursing & Midwifery
King's College of London
London, England UK

Dr. Alison Metcalfe's programme of research focuses on genetic risk communication within families at different life stages from antenatal to end of life care, and evaluating the impact the risk information has on family functioning and their quality of life. Some of her work also examines genetic risk communication between patients and health professionals and the implications this has for patients decisions.

Lauren Walker, BSc (Hons), MBChB (Hons), PHD
Academic Clinical Lecturer
Clinical Pharmacology and Therapeutics
National Institute for Health Research
The Wolfson Centre for Personalised Medicine
University of Liverpool
Liverpool, United Kingdom

Dr Lauren Walker is an NIHR Academic Clinical Lecturer in Clinical Pharmacology & Therapeutics and general internal medicine. Her research interest is in the treatment of drug-resistant epilepsy. She qualified in medicine from the University of Liverpool, with an additional intercalated honours degree in human anatomy and cell biology. Following this she completed her junior medical training in the Mersey medical rotation. Prior to commencing the North West England MRC Clinical Research Fellowship she completed a 2 year Academic Clinical Fellowship in Clinical Pharmacology and Neurology. Her PhD involved identification of novel inflammatory biomarkers for the early stratification of patients with drug-resistant epilepsy. Click here to read more.

Rachel Belk, MSc, BSc
School of Nursing, Midwifery and Social Work
Manchester Centre for Genomic Medicine
Institute of Human Development
Faculty of Medical and Human Sciences
Manchester Academic Health Sciences Centre
University of Manchester
Manchester, United Kingdom

Rachel Belk is a genetic counsellor with18 years’ experience in general genetic counselling, cancer genetic counselling and a longstanding interest in deafness. Since 2003, Rachel has worked in a specialist clinical role in deafness with a particular focus on improving access and communication within the genetic counselling clinic for d/Deaf people. This led to a shift in role in October 2007 to take up a Researcher Development Award from the NIHR to carry out doctoral studies. The subject of her research is ‘Genetic and medical information in British Sign Language: terminology and its impact on access to services’. She continues to work part-time in the North-West Regional Genetics Service in Manchester whilst carrying out her PhD research.

Rachel is currently working on her doctoral research, which was funded by an NIHR Fellowship. She continues to work part-time in a clinical role as a genetic counsellor, based in the North-West Regional Genetics Service in St Mary's Hospital, Central Manchester University Hospitals NHS Foundation Trust. Click here to read more.

Maggie Shepherd, RGN, PhD
Honorary Clinical Professor
University of Exeter Medical School
Exeter, United Kingdom

Maggie Shepherd trained as a RGN at King’s College Hospital and worked as DSN for eight years in Greenwich prior to moving to Exeter in 1995 to join the diabetes genetics research team. She gained a PhD in Medical Science in Exeter which focused on attitudes to genetic testing in diabetes. Maggie also has qualifications in Medical Education and Genetic Counselling. Maggie is Honorary Clinical Professor at the University of Exeter Medical School, Lead Nurse for Research at the Royal Devon and Exeter NHS Foundation Trust and lead co-ordinator of the national Genetic Diabetes Nurse project.

Particular interests include the impact of genetic testing in diabetes, especially the change from long term insulin to tablet treatment and increasing knowledge and awareness of monogenic diabetes. Click here to read more.

Jane Dalrymple
Clinical Midwife Specialist in Fetal Medicine
Fetal Medicine Unit
Rotunda Hospital
Dublin, Ireland

Jane is a Clinical Midwife Specialist (CMS)who practises in the area of prenatal diagnosis in a maternity hospital in Dublin, Ireland. She presents on the work of her clinic team on a regular basis.

Jane was on the project team who wrote, compiled and developed the various content areas for the Resource for Primary Care Professionals.  This content has been developed by members of the National Centre for Medical Genetics (NCMG) and the National Children’s Research Centre (NCRC) as a guide for health practitioners, particularly general practitioners and midwives, in relation to common clinical genetic queries. It is hoped that the information contained herein will go some way towards bridging the information gap that exists in the context of these patient queries. The advice contained in this microsite has been developed and approved by clinical and laboratory-based experts on rare disorders and genetic testing. Click here to read more.

Tracie Miles, PhD
Research and Development Officer
National Forum Gynecology-Oncology Nurses
British Gynecology Cancer Society Council Representative
Information Nurse Specialist, The Eve Appeal
Gynecology Oncology Specialist Nurse
Royal United Hospital
Bath, United Kingdom

Tracie is Lead Gynecology Oncology Nurse Specialist in Bath, England. She manages the entire patient journey from referral through diagnostic work up, surgery, chemotherapy, radiotherapy and follow up. Tracie has an independent clinical practice, running nurse led clinics; on treatment, follow up and research. She also acts as a locum to the Acute Oncology service in her trust. Prior to working in oncology she was a sister in ITU, working in the UK and overseas.

Tracie advises the gynecology oncology charities, BGCS Council/commissioning groups and contributes to NICE technology appraisals. She leads the specialist information service Ask Eve for The Eve Appeal, the U.K. Gynaecology Cancer Research Charity. Tracie is currently supporting Macmillan on a national level working on implementation the Recovery Package. Click here to read more.

Anna Middleton, PhD, MSc, RGC
Principal Social Scientist
Lead of the Social Science and Ethics Group
Wellcome Genome Campus, Cambridge
Cambridge, United Kingdom

Dr Middleton has had two parallel careers: The first as a registered genetic counsellor working within various regional clinical departments in the National Health Service in the UK.

The second as an academic social scientist specialising in research into the social impact of genetic technology and services on people. She is particularly interested in how individuals and families understand and relate to genetic/genomic information and her focus is specifically on research that has a direct impact on genetic counselling practice.
Click here for more information.

2015 ISONG World Congress - Thank you!

It was a record attendance of almost 200 participants for the 2015 ISONG World Congress at the lovely Omni William Penn Hotel in Pittsburgh, Pennsylvania! Thank you to the Congress Planning Committee for their tireless efforts over the past year to deliver an exciting educational opportunity offering a weekend of learning, fun and fellowship! Also, thank you to everyone who attended and supported the Congress.

The reviews are in and the some of the feedback includes: "there was so much about this conference that was excellent, the best that I have attended in the 25 years...," The quality of the speakers were excellent,” “the broad range of topics addressed was excellent!" “Wonderful conference, great variety of speakers,”  “Excellent and I really enjoyed the poster blitz,” “I can't make it to all of them, but this one was truly exceptional with the kind of content and the caliber of the speakers. I am humbled to be among such outstanding and yet, approachable people.” “Loved the "FISH BOWL,"  “Fantastic key note speakers! “Absolutely wonderful; well organized; uplifting.” 

The 2015 Congress included highlighted Keynote and Invited speakers, abstract presentations with specialty areas in practice, research and education in genetics and a widely received  international panel discussion which presented aspects of how genetics and genomics is incorporated into nursing education in their country. A new feature was the “Poster Blitz” session that provided an opportunity for selected poster presenters to briefly describe their posters to all ISONG Congress attendees as well as being available for a discussion during the poster session. In addition, a new Memorial Lecture was introduced to honor one of our founding members, Elizabeth Thomson.  

Thank you to Texas Christian University for the fabulous welcome reception – it was wonderful to come together before the program started and to meet up with new and old friends! Thank you to the University of Pittsburgh School of Nursing for the gracious invitation to tour the school and the impressive genetic lab while offering a generous hosted reception. Thank you Duke University and Duquesne University for sponsoring the Research Grants, Clemson University for their continued support and to all of the sponsors who contributed to support this educational event! We must thank the ISONG members who have contributed to the Research Initiative to help sponsor the research grants for $2,500 each.

There were lots of opportunities to network throughout the congress and some lucky attendees won some enviable items in the ever popular ISONG raffle! During the Annual Business and Awards Luncheon we “passed the gavel” to our new board members and want to thank our outgoing board: Maggie Kirk, Sandy Founds and Jeanine Santelli for all of their efforts on behalf of ISONG over the years. We are delighted to announce the prestigious awards presented at the Congress:

Founders Awards
Excellence in Genomic Nursing Research – Yvette Conley, PhD
Excellence in Genomic Nursing Education – Dennis J. Cheek, RN, PhD, FAHA
Excellence in Genomic Nursing Practice - Katherine Burbank RN, BSN, GCN 

President’s Awards
For their efforts on behalf of ISONG and on the Scope and Standards:
Alice S. Kerber, MN, APRN, ACNS-BC, AOCN, AGN-BC 
Nancy Ledbetter, RN, CNS, APNG, AOCNS, LLC

ISONG Nursing Research Grant Awards
Kosuke Niitsu for his research grant proposal entitled: “Genetic Influence on Resilience to Potentially Traumatic Events.”
Mayu Frank for her research grant proposal entitled: “Cell-Free DNA: Measuring Inflammation in Women with Rheumatoid Arthritis.”

Congratulations to all of the award winners!

Click here to view the final 2015 ISONG Congress Program and join ISONG on Twitter and Facebook for photos from the Congress.









ISONG Celebrates 25 Years!

25th Silver Anniversary

Marcia Van Riper (r) and Milena Floria Santos (l)In 2013, we celebrated the 25th Silver Anniversary. View photos from this milestone event. Congratulations to the 2013 ISONG Founder Awards Recipients:

  • Research Award - Rebekah Hamilton
  • Education Award - Marcia Van Riper
  • Service Award - Kathleen Sparbel



2017 ISONG World Congress

November 3-5, 2017
Hyatt Regency Reston
Reston, Virginia USA











August 4-6, 2016
Royal Marine Hotel, Dun Laoghaire
Dublin, Ireland

Click here for the Final Congress Brochure and Program.

Past Conference Brochures

2015 - ISONG World Congress
2014 - ISONG World Congress
2013 - 26th Annual ISONG Conference

2012 - 25th Annual ISONG Conference
2011 - 24th Annual ISONG Conference
2010 - 23rd Annual ISONG Conference
2009 - 22nd Annual ISONG Conference
2008 - 21st Annual ISONG Conference