Hawai‘i Community Genetics

Hawai‘i Community Genetics is a division of Kapi‘olani Medical Specialists dedicated to caring for individuals of all ages who are affected by birth defects, developmental concerns and genetic conditions. It is a unique collaboration between Kapi‘olani Medical Center for Women and Children, Kapi‘olani Medical Specialists, the State of Hawai‘i Department of Health and the University of Hawai‘i John A. Burns School of Medicine.

Our mission is to provide comprehensive and compassionate care for the people of Hawai‘i, and to provide education for medical personnel and the community about the exciting and ever changing field of medical genetics.

Our Services

We provide both inpatient and outpatient consultations, including one outreach clinic a month to a neighbor island and telemedicine services for our neighbor island families. The following specialty clinics are also available through our clinic:

  1. Hemoglobinopathy Clinic  
  2. Kulana Malama Outreach Clinic 
  3. Metabolic Genetics Clinic 
  4. Kapi‘olani Cleft and Craniofacial Center 
  5. Adult Cancer Risk Assessment Program 
  6. Fetal Alcohol Spectrum Disorder (FASD) Diagnostic Clinic 

Our Team

Our team comprises experts from Kapi‘olani Medical Specialists and the Department of Health. 

Kapi‘olani Medical Specialists

Laurie H. Seaver, M.D.    Laurie H. Seaver, M.D.
Medical Geneticist
Division Head

Dr. Seaver has been in Hawai‘i since 2005 as the Medical Director for Hawai‘i Community Genetics. She completed her undergraduate studies, medical school, Pediatric residency and Medical Genetics fellowship at the University of Arizona (Tucson). She is board certified in Pediatrics and Medical Genetics, and a fellow of the American Academy of Pediatrics and the American College of Medical Genetics. She previously practiced for eleven years at the Greenwood Genetic Center in South Carolina. Her clinical and research interests include birth defects, dysmorphology and Fetal Alcohol Spectrum Disorders.

Genetic doctors from Lucile Packard Children’s Hospital and Stanford Hospital and Clinics come to Hawai‘i Community Genetics to see patients few times a year. In addition to providing their expertise, with their help the wait time for an appointment is shorter.

       
Sansan Lee, M.S.    Sansan Lee, M.S., C.G.C.
Certified Genetic Counselor

Sansan completed her master’s in genetic counseling at Brandeis University in 2009. She is certified by the American Board of Genetic Counseling. Sansan enjoys teaching and has worked with culturally diverse students and families. She has special interests in patient advocacy, community education and genetic testing technology.

     
Sandra Dreike_profile    Sandra Dreike, M.S., C.G.C
Certified Genetic Counselor

Sandra completed her Master of Science degree in genetic counseling at University of California, Irvine in 2010 and is a certified genetic counselor by the American Board of Genetic Counseling. She has been working in the specialty of cancer genetics for since 2010. She currently provides genetic cancer risk assessments and genetic counseling for the Hawai‘i Pacific Health care system. She has special interests in cancer genetics, teaching, and general adult genetics.

 

Frequently Asked Questions
How To Make An Appointment
Location
Specialty Clinics
Parent Support Groups and Local Resources
Other Helpful Links 

Frequently Asked Questions

Why does it take so long to get an appointment?
Currently, there are too few genetic doctors in Hawai‘i. The doctors at Hawai‘i Community Genetics see patients of all ages at several hospitals and clinics. As part of this, they travel to the neighbor islands to see patients. Also, Dr. Seaver teaches at the local medical school and at hospitals in the community. Finally, genetic consults can be quite complex and time consuming, so fewer patients can be seen each week compared to other doctors.

Why was I or a member of my family referred to genetics clinic?
Patients are usually referred by their primary care physician or a specialty doctor.  Sometimes, individuals request our services because they have a family history of a genetic condition or they hope to explore unanswered questions about a medical condition in their family. Some common reasons that people come to genetics clinic include:


  • Abnormal newborn screening results
  • Metabolic disorders
  • Birth defects (eg. cleft lip/palate, congenital heart defects, neural tube defect)
  • Abnormal growth
  • Intellectual disability or developmental delay
  • Blindness or deafness
  • Known or suspected chromosomal or genetic condition
  • Family history of a known or suspected chromosomal or genetic condition, or birth defect
  • Adult genetic concerns
  • Prenatal genetic counseling
  • Hereditary cancer syndromes
  • Cancer risk assessments

How does someone benefit from an appointment?
One of our main goals is to find the cause of or to provide a diagnosis for an individual’s medical condition, and to offer more information about a diagnosis already made.

Sometimes a diagnosis can be made based on the medical and family history and a physical exam.  Sometimes genetic testing is needed (usually blood and/or urine tests). Sometimes images are ordered or other medical specialty referrals are made.
Once a cause or diagnosis is known, we can describe the condition, including expected symptoms and progression, medical management, treatment options, genetic testing for family members, and the chances the condition can occur in other family members and future pregnancies. 

We also aim to assist individuals and families in communicating a diagnosis. Genetic conditions are rare and most people outside of the genetic field are not familiar with the condition. We explore ways to communciate genetics information to others, especially family members who may be at risk. If available, we provide written materials and referrals to support groups, other families with the same or similar condition, and local and national service agencies.

Who is a patient seen by during an appointment?
Generally, our patients are seen by a medical doctor with special training in genetics (a board certified geneticist) and a genetic counselor (who has a master’s degree in genetic counseling).  Sometimes, a dietitian or nurse is part of the visit.  The clinic is also a teaching facility so residents and/or medical students may be at an appointment.

What happens during an appointment?
Genetic appointments usually take about an hour; however, there is usually work done by the doctor or genetic counselor before and after the appointment. 

Before the appointment:  Genetic counselors usually call patients and/or the referring doctor before the appointment to:

  • Explore concerns and questions.
  • Document a patient's medical, family, and pregnancy information.
  • Obtain and review medical records, including any previous lab testing or imaging done on patient and affected family member(s) as needed.

During the appointment:  Geneticist and genetic counselor usually evaluates the family together to:

  • Address concerns and questions.
  • Review the patient's medical, family and pregnancy information.
  • Perform a physical exam (if indicated).
  • Discuss the diagnosis or possible diagnoses and recommended genetic tests and/or other medical evaluations.

Note: Many genetic tests are sent to mainland laboratories and the results usually take 3-4 weeks, sometimes longer. 

After the appointment:  The doctor and/or the genetic counselor will:

  • Arrange laboratory testing.
  • Summarize the appointment and send this information to the patient, referring doctor, and other doctors caring for the patient.
  • Encourage family to re-contact genetics clinic when considering pregnancy or for updated information.
  • Be available to answer future questions.

Who needs to be there?
For a child, it is helpful for both parents to come to the appointment along with the child. Other family members are welcome to attend with a patient's or, in the case of a minor, with the parent's permission. Spouses are always welcome. Our staff will let you know if other family members should attend, or if it would be helpful to gather information from family members prior to the appointment.

How often do we recommend lab work?
Whether we recommend lab work for a patient depends on what we conclude once we have evaluated a patient. The genetics team lets patients know at the end of the appointment whether genetic or other tests are recommended. Lab tests are usually performed on blood or urine and not usually done on the day of the appointment.

How can a patient or family pepare for an appointment? 

  • Find out if there are any health problems in immediate or extended family members to help us accurately review family medical history.
  • For individuals with developmental concerns or birth defects, it helps if you bring a few photos of the immediate and extended family.
  • Prepare a list of questions to ask the genetic counselor and geneticist.

How To Make An Appointment

Please either call Hawai‘i Community Genetics at (808) 973-3403 or fax your referral form to (808) 973-3401 and we will be happy to assist!

Hawai'i Community Genetics Referral Form 

Cancer Genetics Referral Form 


Location

Hawai‘i Community Genetics
Ala Moana Building
1441 Kapi`olani Blvd, Suite 1800
Honolulu, HI 96814
Phone: (808) 973-3403
Fax: (808) 973-3401

 

View Larger Map 


Specialty Clinics

Hemoglobinopathy Clinic:  Specializes in caring for individuals and families who are affected with or carriers for alpha thalassemia, beta thalassemia, sickle cell anemia, glucose-6-phosphate dehydrogenase deficiency, hemoglobin variants, or other inherited anemias. 

Kulana Malama Outreach Clinic:  Inpatient genetics consultations for residents of Kulana Malama.  We team up with the nursing home’s medical staff to provide diagnosis and management for medically fragile children. 

Metabolic Genetics Clinic:  Provided by a team of specialists, this clinic cares for children and families with known or suspected inborn errors of metabolism.  Our state screens for 32 disorders, and most of the conditions screened for are metabolic disorders.  Early diagnosis and treatment of inborn errors of metabolism may help prevent intellectual disabilities, developmental delays, organ damage, and, in some cases, death. 

Kapi‘olani Cleft and Craniofacial Center: Located at Kapi‘olani Medical Center, this clinic provides comprehensive diagnostics and treatments for children born with a cleft lip and/or palate and children born with craniofacial anomalies. Other reasons for children to come to this clinic include a sub-mucous cleft palate, speech concerns (e.g. hyper-nasal speech) and dental concerns related to the above conditions. We provide genetic counseling at this clinic. Click to learn more. 

Adult Cancer Risk Assessment Program:The aim of the Cancer Genetics Program is to identify individuals who have inherited an increased risk of cancer, provide accurate risk assessment for these individuals and their family, aid in the appropriate genetic testing, and educate them about available screening and cancer prevention strategies. A physician referral is encouraged. Please call our office for referral details.

Fetal Alcohol Spectrum Disorder (FASD) Diagnostic Clinic: This clinic is designed to evaluate infants, children, adolescents, and adults who are suspected of having Fetal Alcohol syndrome or a related condition. Fetal Alcohol Syndrome may be considered when there is a history of maternal alcohol use during pregnancy associated with short stature, poor weight gain, small head size, delays in development and/or behavioral concerns. Fetal Alcohol Syndrome can be diagnosed in some individuals who have characteristic features even if the history of maternal alcohol use is unknown. Patients may be self/family-referred or referred by school or a social service agency, but referral from the primary physician is encouraged and may be necessary for insurance coverage. Please see FASD Screening Checklist and specific FASD Diagnostic Clinic Referral form.

Parent Support Groups and Local Resources

A few local support groups currently exist for children and families affected by genetic conditions.  These are great resources for families in need of support for certain genetic conditions. Please contact us at (808) 973-3403 if you are interested.

Local Resources

Hawai‘i State Genetics Program:
http://www.hawaiigenetics.org 

Hawai‘i Department of Health Children with Special Health Needs Branch:
http://health.hawaii.gov/cshcn 

Hawai‘i Chapter of Family Voices:
http://www.familyvoices.org 

Hawai‘i State Newborn Screening Process:
http://health.hawaii.gov/genetics/programs/nbshome/ 

Hawai‘i Special Olympics:
http://www.specialolympicshawaii.org 

Manawale`a Riding Center:
http://www.manawalea.org/about.htm 

Therapeutic Horsemanship of Hawai‘i :
http://www.thhwaimanalo.org 

Patient Links

The Hawai‘i State Genetics Program has a comprehensive listing of links related to genetics on the world wide web that can be found here:
http://hawaii.gov/health/family-child-health/genetics/genetics