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:iihg@uiowa.edu|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