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 Queen’s Medical Center, 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:
- Hemoglobinopathy Clinic
- Kulana Malama Outreach Clinic
- Metabolic Genetics Clinic
- Kapi‘olani Cleft and Craniofacial Center
- Adult Cancer Risk Assessment Program
- Fetal Alcohol Spectrum Disorder (FASD) Diagnostic Clinic
Our Team
Our team comprises of experts from both Kapi‘olani Medical Specialists and Department of Health.
Kapi‘olani Medical Specialists
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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.
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Thomas Slavin, M.D.
Medical Geneticist
Dr. Slavin has been in Hawai‘i since 2010 with Hawai‘i Community Genetics. He completed his undergraduate studies and medical school at the University of South Florida, his Pediatric residency at Rainbow Babies and Children’s Hospital, and his Medical Genetics residency at University Hospitals, Case Medical Center in Cleveland, Ohio. He has also completed additional externships through the National Institutes of Health and John’s Hopkins Medical Center. He is a board certified in Pediatrics and board eligible in Medical Genetics. He is a fellow of the American Academy of Pediatrics. His clinical and research interests include general clinical genetics, preventative genetics and epidemiology, and cancer genetics.
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Sansan Lee, M.S.
Genetic Counselor
Sansan completed her master’s in genetic counseling at Brandeis University in 2009 and is a member of the National Society of Genetic Counselors. She is eligible to take the American Board of Genetic Counseling certification exam in 2010. 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.
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Frequently Asked Questions
How To Make An Appointment
Location
Specialty Clinics
Parent Support Groups and Local Resources
Other Helpful Links
Why does it take so long to get an appointment?
Currently, there are too few genetic doctors in Hawai‘i. The physicians at Hawai‘i Community Genetics see patients of all ages at several hospitals and clinics, including travel to the neighbor islands, to provide access to genetic services. Dr. Seaver and Dr. Slavin also spend time teaching at the medical school and hospitals in the community. Finally, genetic consultations can be quite complex and time consuming, so fewer patients can be seen each week compared to other physicians.
Why was my child referred to genetics clinic?
Your doctor likely asked us to see your family. Most of the patients who come to our clinic are referred by pediatricians or other specialty doctors. Sometimes, families want our services because they have a family history of a genetic disorder or they hope to get any unanswered questions to their child’s condition. Some of the common reasons that people come to a Genetics clinic include:
- Abnormal newborn screening results
- Metabolic disorders
- Birth defects (eg. cleft lip/palate, congenital heart defects, neural tube defect)
- Abnormalities in growth
- Mental retardation or developmental delay
- Blindness or deafness
- Known or suspected chromosomal or genetic condition
- Family history of a known or suspected genetic condition, birth defect, or chromosomal condition
How will my child benefit from the appointment?
One of our main goals is to find the cause or diagnosis of your child’s medical condition, or to provide more information about a diagnosis already made.
Sometimes a diagnosis can be made based on the medical and family history and physical examination. Sometimes genetic testing is needed (usually blood and urine tests). Sometimes x-rays are ordered or other medical specialty referrals are made.
Once the cause or diagnosis is known, we can then explain any issues about the condition, such as expected course of the condition, management of the condition, treatment options, genetic testing for family members, and the chances of the condition occurring in future pregnancies.
We also aim to assist your family in communicating the diagnosis.
Often times, genetic conditions may be rare and most people you meet outside of the genetics field are not familiar with the condition. We will explore with you ways to communicate the information to others, especially family members who may be at risk. We will also provide written materials and referrals to support groups, other families with the same or similar condition, and local and national service agencies if available.
Who will I be seeing at the appointment?
You will likely be seeing a medical doctor with specialized training in genetics (geneticist) and a genetic counselor (has a master’s degree in genetic counseling). Sometimes, a dietitian or nurse is present to help care for your child’s health. The clinic is also a teaching facility so residents and/or medical students may also be at the appointment.
What happens during the 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 families and the referring doctor before the appointment to:
- Explore the concerns and questions of the parents
- Document medical, family, and pregnancy information on the child.
- Obtain and review medical records, including any lab testing or x-rays previously done on patient and affected family member(s) as needed.
During the appointment. A geneticist and genetic counselor usually evaluates the family together to:
- Address the concerns and questions of the parents.
- Review the medical, family and pregnancy information.
- Perform a full physical examination.
- 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 for laboratory testing.
- Summarize the appointment and send this information to the referring doctor, other doctors caring for the patient, and family.
- Encourage family to re-contact the 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 both parents come to the appointment along with the child. Other family members are welcome to attend with the parents or patients permission. The genetic counselor will let you know if other family members need to be present, or if would be helpful to talk to family members prior to the appointment.
Will my child need lab work?
Whether your child needs lab work will depend on what we find after we have seen and evaluated your child. The genetics team will let you know at the end of your appointment whether genetic testing or any other lab work or tests are needed. These are usually performed on blood or urine and not usually done on the day of the appointment.
What can I do to prepare for the appointment?
- Find out if there are any health problems in immediate or extended family members.
- Bring 5-10 family photos of the immediate and extended family. In genetics, we like to see how your child resembles the rest of the family.
- Prepare a list of questions to ask the genetic counselor and geneticist.
Do you see adult patients?
Yes, actually our cancer risk assessment program is specifically for adult patients. The visit is similar to our above descriptions of the children’s visits. The at risk individual will see a genetic counselor first to discuss their, or their physician’s, concerns and to review their family history. You may see a clinical geneticist if needed. Sometimes laboratory testing is recommended. Please talk with other family members before the appointment to help us accurately review your family’s medical history.
| Please call Hawai‘i Community Genetics at (808) 973-3403 and Ronnie Stringer will be happy to assist you or fax in the referral form. |
Hawai‘i Community Genetics
Ala Moana Building
1441 Kapi`olani Blvd, Suite 1800
Honolulu, HI 96814
Phone: (808) 973-3403
Fax: (808) 973-3401
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Hemoglobinopathy Clinic: specializes in caring for individuals and families who are affected or carriers for alpha thalassemia, beta thalassemia, sickle cell anemia, glucose-6-phosphate dehydrogenase deficiency, hemoglobin variants, and other inherited anemias.
Kulana Malama Outreach Clinic: in-patient genetic consultations for residents of Kulana Malama. In a home-like environment, 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 mental retardation, 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 diagnostic and treatment services 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 (for example, hyper-nasal speech) and dental concerns related to the above conditions.
Adult Cancer Risk Assessment Program:The purpose of the Cancer Genetics Program is to identify individuals who have inherited a high 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.
Fetal Alcohol Spectrum Disorder (FASD) Diagnostic Clinic: This clinic is designed to evaluate infants, children, adolescents or adults who are suspected to have Fetal Alcohol syndrome or a related disorder. Fetal Alcohol Syndrome may be considered when there is a history of maternal alcohol use during the 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 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.
Two local support groups currently exist for children and families affected by genetic conditions. These are great gatherings for individuals and parents who want family support for certain genetic conditions.
Rainbow Kids: support group for parents and their children who have chromosomal conditions.
Hawai‘i Neurofibromatosis Support Group: for children and their families who have Neurofibromatosis type 1 or 2.
Please contact us at (808) 973-3403 if you are interested.
Hawai‘i State Genetics Program:
http://www.hawaiigenetics.org/
Hawai‘i State Newborn Screening Program:
http://hawaii.gov/health/family-child-health/genetics/nbshome.html
Hawai‘i Department of Health Children with Special Health Needs Branch:
http://hawaii.gov/health/family-child-health/cshcn/aboutus.html
Hawai‘i Chapter of Family Voices:
http://www.familyvoices.org/states.php?state=HI
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/index.html
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/links.html