What will happen during a genetic counseling appointment? (continued)
• Helpyouplanwhattodowiththeresults
• Givemedicalscreeningrecommendationsifyouhaveanincreasedchanceofageneticcondition,evenifyouchoosenottohavetesting
• Talkaboutwhatyourresultsordiagnosismeansforyourfamilyandhowyoucantalktoyourfamilyaboutyourresults
• Giveyouinformationaboutsupportgroups,resources,andreferralsformedicalspecialistsforthemanagementofyourhealth
• Providecounselingandemotionalsupport
What should I do during a genetic counseling appointment?
• Askquestionsandtalkaboutanyconcernsyouhave.Remember,thegeneticcounseloristheretohelpyou.
• Youcantakenotes
Helpful Websites
Iowa Institute of Human Genetics (IIHG) >>www.medicine.uiowa.edu/humangenetics
National Society of Genetic Counselors (NSGC)>>www.nsgc.org
American Board of Genetic Counselors (ABGC) >>www.abgc.net
Genes in Life >>genesinlife.org
Contact IowaInstituteofHumanGenetics,UniversityofIowa285NewtonRoad,5296CBRB,IowaCity,IA52242Phone:(319)335-3688|Fax:(319)335-3484Email:[email protected]|www.medicine.uiowa.edu/humangeneticsFollowusonTwitter@IIHG_Genetics
Ask for our other booklets about personalized genomic medicine, genetic testing, exome sequencing, and pharmacogenomics.
The Iowa Institute of Human Genetics (IIHG) can provide genetic counseling for genetic testing performed through the IIHG
What is Genetic Counseling? IowaInstituteofHumanGenetics
Updated September 2013 Iowa Institute of Human Genetics
What is genetic counseling? Ageneticcounselorwilltalkwithyouaboutmedicalandgeneticinformationinawayyoucanunderstand.Geneticcounselorsteachyouandyourfamilyaboutgeneticsandhowitaffectsyourhealth.Thishelpsyoumakechoicesaboutgenetictestingandlifeplans.Geneticcounselorsareheretoansweryourquestionsandsupportyou.They:
• Arepartofyourhealthcareteamandworkcloselywithyourdoctorstochoosethebesthealthplanforyou
• Canteachemployers,teachers,orothersaboutageneticconditioninyourfamily
• HaveaMaster’sdegreeinhumangeneticsorgeneticcounselingandmustpassanationaltesttobeaCertifiedGeneticCounselor(CGC)
Will a genetic counselor tell me what to do?Geneticcounselorsarenondirectivecounselors.Thismeanstheydonottellyouwhattodo.Instead,theywillguideandhelpyoumakeyourowninformeddecisions.
Why would I need to see a genetic counselor?Youmaywanttoseeageneticcounselorifyou:
• Arepregnantorthinkingofbecomingpregnant
• Haveageneticconditionorafamilyhistoryofageneticcondition
• Areconsideringhavingagenetictestorhavehadagenetictestorscreen
• Havehadanabnormalgenetictestresult
How do I choose the right genetic counselor for me?Yourdoctorcanreferyoutoageneticcounselor,oryoucanselectoneonyourown.Geneticcounselorsworkindifferentsettingsandmayspecializeincertainconditions,suchas:
• Prenatal(pregnancy)
• Pediatric(kids)
• Cancer
• Adultonsetdisease
• Neurology(brainandnervoussystem)
How can I prepare for a genetic counseling visit?
• Youmaywanttomakealistofquestions
• Bringmedicalrecordsaboutyourconditionoraskyourdoctortosendthem
• Reviewyourmedicalandfamilyhistory.Geneticcounselorsmayaskaboutthehealthofyourspouse,children,parents,siblings,grandparents,andotherbloodrelatives.
• Checkwithyourinsurancecompanytoseeiftheycovergeneticcounseling.Youmayneedtopayforsomeoralloftheappointment.
Youarewelcometobringsomeoneorgototheappointmentbyyourself.
What will happen during a genetic counseling appointment?Itwilldependonthereasonforyourappointmentandthegeneticcounselor.Mostappointmentstakeanhourbutcanvary.Youmayneedoneappointmentorseveral.Often,ageneticcounselorwill:
• Talkaboutwhyyouarethere
• Reviewyourmedicalandfamilyhistory
• Explainmedicalandgeneticinformation,suchas:
– Describingacondition,itscause,ifitwillprogress,andhowtomanageandtreatit
– Howgeneticconditionsarepassedonfromparentstokids(inherited)
– Ifyouoryourfamilymembersareatrisktodevelopadisease
– Howknowingthecauseofyourconditioncanhelpyou
• Findtherightgenetictestforyourcondition
• Tellyouaboutgenetictestingoptions,whattestingcanandcannottellyou,testingprocessandcosts,andanyrisksofdiscriminationbasedonyourresults
• Helpyoudecideifgenetictestingwillbeusefultoyou
• Arrangetestingifyoudecidetohaveitandworkwithyouandyourinsurancecompanytounderstandyourcoverage
• Receivetestresultsandexplaintheresultstoyouinpersoninawayyoucanunderstand
What is Genetic Counseling? • Iowa Institute of Human Genetics
• Personalizedgenomicmedicine(usingyourgenesandfamilyhistorytoimproveyourhealth)
• Psychiatric(mentalhealth)
• Research