Yolngu Matha
Nha rare genetic condition-dja?
Nha DNA-dja ga nha lika ngarunguyiny dhawu mala ngayatham?
Meeting-nha dhu genetic counsellor-ny
Dharrwamirr Lika Ŋäŋ’thun Questions
Dharrwamirr Lika Ŋäŋ’thun Questions
1. DNA, Chromosomes ga Genes
Nhä DNA-dja?
DNA-dja instructions ŋunhiyi dhuka ḻakaram nhokal rumbalwal nhaltjan ŋayi dhu ŋuthan, djäma ga dhorrthirr.
Full-dja yäku Deoxyribonucleic Acid, wo DNA gurririny.
DNA-dja li maḻŋ’maram warrpam’kal living things-gal - Yolŋuwal, warrakan mala, plants, ga wiripuny nyumukuṉinynha mirithirr bacteria! Ŋuruŋiyi lika gäma information ŋunhiyi li guŋga’yun living things-nha mala survive-gu ga bloodline mala ga traits walalaŋ gäma.
Traits-dja nhuŋu characteristics wo features.
Balanyany mak balaŋ physical - nhakun marwat wo mel miny’tji, wo ŋulanha mala ŋunhiyi ga bäyŋu nhäma - nhakun nhuŋu blood type.
Ŋunhiyi nhe balaŋ nhäŋu mali’ DNA, nheny dhu nhäma ŋunhiyiny dhorr nhakun twisted-puy ladder.
Scientists-dhuny lika ḻakaram ŋunhiyiny double helix.
Ŋunhiyi “steps” ladder-wdja ŋamaŋamayunmirr chemicals ŋunhiyi lika act nhakun code djänharaw ga marrtjinmaranharaw nhuŋu rumbalgu.
Ŋunhiyiny special chemicals-dja explained yalala dhiyal document-ŋur.
Wanhaŋuwuy DNA-dja?
DNA-dja li marrtji bloodline-ŋur parents-gal bala djamarrkuḻiwal.
Half-dja nhuŋu DNA li marrtji waŋganyŋur parent-kal ga half li marrtji wiripuwal parent-kal. Dhiyaŋun mak li nhe ŋayatham ga nhuŋu bäpa’mirriŋuw mel miny’tji ga nhuŋu ŋäṉḏi’mirriŋuw curly marwat.
Bäythi balaŋ nhuŋu wäwa’mirriŋuy mala ga yapa’mirriŋuy mala ŋayathul DNA same-wuŋ parents-guŋ, yakan li exactly same-dja mix märram. Dhiyaŋun romdhu li nhe ga nhuŋu wäwa’mirriŋu mala ga yapa’mirriŋu mala similar-dhirr dhorr yurr yakan identical-dja.
Nhokal parents-dhuny li märram DNA maṉḏaŋguŋ parents-wuŋ, ga walaŋguny parents-dhu li märram walaŋgal.
Dhuwandja mayali’ nhuŋu DNA-dja li connects nhunany nhokal ancestors-wal, ŋunhiyi ga roŋiyirr ŋula nhämunha’ thousands of years.
Wanha li DNA-dja maḻŋ’maram?
DNA-dja li maḻŋ’maram djinawa nhokal cells-ŋur, ŋunhiyi nyumukuṉiny mirithirr building blocks ŋunhiyi ga make up nhuŋu rumbal.
Cells-dja lika rrambaŋi djäma ŋamaŋamayunaraw nhuŋu barrwaṉgu, muscles, ŋaraka ga organs-gu mala. Each type balanya cell-guny special djäma. Nhakun example-dja, muscle cells-dhuny li guŋga’yun nhunany move-gu; lung cells-dhuny li guŋga’yun nhunany ŋir’yunaraw; ga skin cells-dhuny li protect nhuŋu rumbal.
Wiripu-wiripu cells-dhuny li bäki wiripu instructions nhokal DNA-ŋur djämaw nhanŋuwuy.
Nhä chromosome-dja?
DNA-dja nhakun wiyin’ raki. Ŋunhiyi balaŋ nhe wiyin’kuŋ warrpam’ DNA waŋganyŋur nhokal cells-ŋur, nhunhiyiny balaŋ 2 metres djaka!
Marrka dhu yaka yätjtjirr wo twisted, limurruŋgal cells-dhuny li pack warrpam’ limurruŋ
DNA nyumukuṉinylil packages-lil. Dhuwandja packages yäku “chromosomes”.
Each chromosome-dhuny lika ŋayatham gäna part nhuŋu DNA.
“Mali’” warrpam’ nhuŋu chromosomes mak balaŋ balanya dhorr nhakun dhuwal:
Humans-dhuny lika usually-ny ŋayatham 46 chromosomes. 23 waŋganywuŋ parent-kuŋ, ga 23 wiripuwuŋ parent-kuŋ.
Chromosomes-nhany li gurrupan numbers ŋunhiyi based roughly nhäthinya ŋayi djaka.
Each parent-thuny li gurrupan nhunany waŋgany copy warrpam’ ŋunhiyi chromosome number.
Chromosomes-dja yäku “X” ga “Y”-dja special. Ŋunhiyiny yäku “sex chromosomes”
bili ŋuruŋiyi li ḻakaram nhä nhuŋu sex -wanha nhe dhu dhawal-guyaŋan ḏirramu wo miyalk.
Nhä letters A, C, G ga T-ny mayali’?
DNA-ŋurdja special code ŋunhiyi made up 4 letters mala: A, C, G ga T.
Letter-dja mala lika dhärra yäkuw mala djinawa nhokal DNA-ŋur:
A = adenine
C = cytosine
G = guanine
T = thymine
A lika bitjan bili pairs T-wal
C lika bitjan bili pairs G-wal
Dhiyaŋ letters-dhuny lika form words mala ŋunhiyi lika nhokal rumbalyu bäki nhakun instructions djänharaw nhanŋuwuy ga function-gu.
A T G T T A G G C T G
Bäythi nhakun warrpam’thu humans-dhu li ŋayatham ga mirithirr similar DNA, nyumukuṉiny djambi mala spelling-ŋur limurruŋgal instructions-ŋur li each Yolŋuny unique-kum.
A T G T T C G G C T G
Dhiyaŋ nyumukuṉinydhu differences-dhu li guŋga’yun djarr’yunaraw balanyaraw mala nhakun nhuŋu djaka, marwat miny’tji ga buluny wanha nhokal li manymakthirr certain ŋatha!
A T G T T T G G C T G
Wiripuny, ŋunhiyi li spelling mistake instructions-ŋur wo letter ga missing, mak balaŋ problems mirriyaŋ rumbal - nhakun rirrikmaraŋ balaŋ Yolŋuny wo gulmaram ga ŋulanhany djämaŋur.
Nhä gene-dja?
Gene-dja nyumukuṉiny section DNA-ŋur ŋunhiyi ga ŋayatham instructions specific djämaw nhokal rumbalŋur.
Humans-guny ga ŋorra mak 20,000 genes!
AAGTCCATGC ... TTCGAGATCC ... GATTCCAGTA ...
Each gene-dja made up unique sequence-ŋur ŋunhiyi A, C, G, T, nhakun sentence ŋunhiyi djäma wiripu-wirpu letters-dhu alphabet-ŋur.
Nhaltjan li genes-dhuny affect ŋarraku health?
Dharrwamirrdja li nyumukuṉiny djambi mala DNA-ŋur bäyŋu li problems djäma. Yurr sometimes-dja, waŋgany djambi gene-ŋurdja balaŋ gulmaraŋ ŋanya djämaŋur maymakŋur. Dhiyaŋuny mak balaŋ Yolŋuny bulun likely märranharaw certain health conditions-gu.
Some health conditions-dja family-gurr lika waṉḏirr bili passed down ŋunhiyi DNA-gurr.
Nhakun example-dja, some balanya types diabetes ga cancer-ny bulun common certain families-gal mala.
Wiripuny, gene li djambi yän waŋganygal Yolŋuwal ŋurruŋun ŋunhi li bloodline-ŋur.
Important-tja guyaŋa dhu bäyŋundhu yolthu control nhaltjan nhanŋu dhuka genes djäma. Ŋunhiyi dhuka gene yaka manymakkum djäma, yaka ŋunhiyi bawalamirriw fault.
Wiripuny, gene-dja li djambi yaka ŋunhiyi mayali’ nhe dhu rirrikthun. Sometimes-dja, ŋunhiyiny mayali’ nhuŋu chance mak dhu gaŋga ŋal’yun.
Nhä difference-dja genetics ga genomics-guny?
Bäythi maṉḏa sound-tja nhakun similar, genetics ga genomics-dja gäna-gana.
Genetics-dja
study li waŋgany wo few genes waŋganymirr waluy.
Nhäma li nhaltjan li traits mala passed parents-wuŋ djamarrkuḻiwal ga nhaltjan li genes-dhu affect health.
Genomics-dja
study li warrpam’ku buku-waŋgany Yolŋuw genes rrambaŋin yan.
Nhäma li nhaltjan lika genes djäma buku-waŋgany ga nhaltjan walal li interact walalaŋuwuy.
2. Genetic Testing Explained-puy
Nhä genetic testing-dja?
Genetic testing-dja special type health test ŋunhiyi dhuka nhäma DNA nhuŋu. Guŋga'yun li marrŋgitjnha mala dharaŋanaraw nhuŋu genes-gu ga nhaliyak balaŋ ŋuruŋiyi affect nhuŋu health. Balanyaraydja li guŋga'yun walalany gurrupanaraw nhuŋu best care-w possible.
Nhaltjan dhu genetic testing-dhuny guŋga’yun ŋarrany?
Genetic testing-dhuny mak balaŋ guŋga'yurr wiripu-wiripuŋur situations-ŋur nhakun:
Maḻŋ’maranharaw answers-gu: Ŋunhiyi nhe ga rirrikthun ga wiripuy health test-thu bäyŋun ḻakaraŋal nhaliy, genetic testing-dhu mak balaŋ guŋga’yurr marrŋgitjnha mala dharaŋanaraw nhä ga happening.
Family history: Ŋunhiyi certain health conditions mala marrtji lika nhokal family-gurr genetic testing-dhuny balaŋ milkuŋ wanha balaŋ nhe risk-ŋur.
Djarr’yunaraw right-ku treatment-ku: Some mirritjin’ mala li manymakthirr certain-gu Yolŋuw.
Genetic testing-dhuny li guŋga’yun marrŋgitjnha mala djarr’yununaraw nhä treatments balaŋ best nhuŋu, especially conditions-gu mala nhakun cancer.
Planning ga yothuw: Ŋunhiyi nhe ga guyaŋa ŋurruyirryunaraw family, genetic testing-dhu balaŋ check wanha balaŋ chance nhokal yothuy balaŋ inherit condition.
Yolnha ŋarra dhu nhäma ŋunhiyi ŋarra djäl genetic test-ku?
Ŋunhiyi nhe ga guyaŋa märranharaw genetic test-ku, nhuŋuny ŋurruŋu step-tja waŋa nhe dhu health professional-wal. Dhuwandja mak balaŋ nhuŋu local GP, wo Aboriginal Health Worker.
Ŋayi balaŋ nhunany guŋga’yurr dharaŋanaraw wanha balaŋ genetic testing useful nhuŋu ga guide nhunany nhaltjan nhe dhu next.
Depending ga nhuŋu situation, mak balaŋ nhe referred to:
Specialist marrŋgitj: Dhuwandja marrŋgitj ŋunhiyi extra training-mirr particular area health-ŋur, nhakun specialising ga genetics-ŋur, bamburuŋburuŋŋur (neurologist), wo ḏoḏurrk-ku (cardiologist). Mak balaŋ walal dhu bulu tests guŋga’yunaraw djarr'yunaraw wanha genetic testing needed.
Genetic counsellor: Genetic counsellors-dja mala specially trained health professional mala ŋunhiyi lika ḻakaram nhaltjan lika genetic testing djäma, nhä ŋuruŋiyi balaŋ ḻakaraŋ, ga nhä balaŋ results-dja mayali’ nhuŋu ga nhuŋu gurruṯumirriw. Buluny balaŋ walal support gurrupal yorrnha dhu testing ga dhäŋura beŋurin. [Click here] bulu maḻŋ’maranharaw genetic counselling-gu.
Wiripu health professionals: Depending ga nhä nhuŋu health-puy warwu, nhe mak balaŋ wiripuny nhanŋu specialists-nha, nhakun paediatrician (djamarrkuḻiw health-ku), oncologist (cancer-w mala rerriw) wo reproductive specialist (yothumirriw mala ga fertility related testing-gu).
Nhuŋu marrŋgitj wo health worker-dja dhu guŋga’yun nhunany connect-ku right people-gal. Ŋunhiyi nhe bulu djäl marŋgithinyaraw wiripu-wiripu health professionals-gu ŋunhiyi involved genetic testing-ŋur, [click here].
Nhaltjan lika genetic testing-dja djäma?
Yorrnha nhe dhu märram genetic test, health professional - nhakun marrŋgitj wo genetic counsellor - waŋa dhu nhokal ḻakaranharaw nhä balaŋ test-thu ḻakaraŋ wo yaka ḻakaraŋ.
Walal dhu ḻakaram process ga buku-bakmaram questions mala nhe balaŋ gi ŋayathul.
Märramany nhe dhu test-tja ŋunhiyi nhe djäl ga gurrupan permission (consent).
Ŋunhiyi nhe dhu yoram, need-tja nhe dhu gurrupan nyumukuṉiny sample. Dhuwandja usually gulaŋ wo ŋäl, yurr sometimes-dja mak balaŋ swab djinawa burumun’ŋur wo nyumukuṉiny piece nhuŋu barrwaṉ. Some-ŋurdja cases, wiripu type balaŋ sample needed.
Nhuŋuny sample beŋuriny dhu djuy’yun laboratory-lil, ŋunhiyi li scientists-dhu bäki special machines mala nhänharaw nhuŋu DNA-gu.
Check walal dhu nhuŋu genes wanha balaŋ djambi mala ŋunhiyi balaŋ ḻakaraŋ health condition wo predict future health risks mala, wo guŋga’yurr guide treatments option-gu mala.
Dharrwamirriydja, nyumukuṉiny yän part nhuŋu DNA-dja li nhäma -ŋunhiyi bili sections ŋunhiyi linked nhokal health issue-lil ŋunhiyi ga nhokal marrŋgitjthu nhäma. Yurr some cases-ŋurdja, warrpam’ buku-waŋgany nhuŋu DNA mak balaŋ need analysed-ku, especially ŋunhiyi balaŋ marrŋgitj mala yaka sure nhaliy ga causing nhuŋu symptoms.
Bili genetics-dja dhumbal’maranhamirr, wiripu-wirpu health professionals mak balaŋ involved analysing-gu ga interpreting-gu nhuŋu results-guny. Scientists, genetic specialists ga researchers-nha mala mak balaŋ wiripuny ŋäŋ’thurr guŋga’yunaraw making sure-w ŋunhiyi results-dja accurate as possible. Dhuwandja li process take some time—sometimes ŋula nhämunha’ weeks wo months—depending lika nhäthinya test ga djäma.
Ŋunhiyi dhu results-dja retin, nhuŋu marrŋgitj wo genetic counsellor dhu go through ŋunhiyi nhokal. Walal dhu ḻakaram nhä results-gu mayali’ nhuŋu ga nhuŋu gurruṯumirriw ga waŋa dhu next steps-gu, including treatment wo bulu testing ŋunhiyi needed.
3. Ŋulanha Mala Gunyaŋinyaraw Yorrnha Balaŋ Genetic Testing-dja
Nhaltjan ŋarra dhu support-tja märram ŋunhiyi ŋarra need?
Genetic testing-dja mak balaŋ overwhelming. Dharrwa mak balaŋ information galkanaraw. Dhuwal some dhukarr mala process-gu easier-gunharaw.
Gäŋu Yolŋuny bämara – Support person-dhu wo interpreter-y balaŋ guŋga’yurr nhunany ga ŋäŋ’thurr important questions mala.
Maḻŋ’maraŋ advocacy group – Organisations mala ga nhina each state ga territory-ŋur support-ku balaŋ nhuŋu. [Click here] map-ku.
Lean family ga ḻunduwal – Walal balaŋ gurrupal emotional support, ga genetic testing results mak balaŋ important walalaŋgal wiripuny.
Nhämunha’ li genetic testing-dja ŋupan?
Cost genetic testing-guny li depends on nhäthinya ŋunhiyi test. Some-dja li tests mala covered Medicare-y wo nhokal state/territory goverment-thu. Nhokal marrŋgitjthu wo genetic counsellor-dhu ḻakaram nhuŋu options mala.
Ŋula dhu genetic test results-dhu affect ŋarraku insurance?
Märranharaw genetic test-ku wo märranharaw nhuŋu results-guny yaka dhu djambi nhuŋu health insurance wo nhämunha’ nhe lika wuŋuḻi’yun. Yurr Australia-ny, bäyŋu ga rules ŋorra gulmaranharaw life insurance companies-gu mala ŋäŋ’thunaraw nhuŋu märranharaw genetic test-ku wo milkunharaw nhuŋu results-gu. Walal mak dhu bitjan check-ku wanha nhuŋu ga marr yindi ŋorra chance märranharaw certain health problems-gu ŋunhiyi lika marrtji families-gurr, nhakun some cancers mala wo rare rerri mala.
Australian Government-thu ga planning ŋamaŋamayunaraw yuṯaw rules-gu protect-ku bawalamirriw. Dhiyaŋguny dhu rules-dhu make sure insurance companies-dhu mala yakan dhu make nhunany märranharaw genetic test-ku wo ŋäŋ’thunaraw nhuŋu results-gu.
Bulu information-gu, visit: Ban on the use of adverse genetic testing results in life insurance | Treasury.gov.au
Yolthu balaŋ access-dja gi ŋayathul ŋarraku test results-gu?
Nhuŋu test results-dja dhuka access nhokala yän health provider-y ga nhen. Ŋunhiyi ga wiripu djälthirr access-gu nhuŋu test results-gu, nhen dhu gurrupan consent. Nhanŋu next section marŋgithinyaraw bulu consent-gu.
4. Consent
Nhä consent-tja?
Consent-tja mayali’ gurrupan ga permission. Informed consent-tja mayali’ nhe ga fully dharaŋan ŋunhiyi nhaku nhe yoram yorrnha nhe decision djäma. Dhuwandja mayali’ warrpam’ nhokal ḻakaram clear yan yorrnha nhe djarr’yurr ŋulanha.
Yorrnha balaŋ djäma genetic test, some-dja mala balaŋ ḻakaraŋ marrŋgitjthu wo genetic counsellor-y, balanya mala:
- Nhalayak balaŋ test-thu nhunany guŋga’yurr
- Nhä balaŋ results-dja mayali’ nhuŋu ga nhuŋu gurruṯumirriw
- Nhäkurr dhu nhuŋu sample ga DNA djuy’yun ga ŋayatham
- Yolthun balaŋ gi nhäŋu nhuŋu test results
GUYAŊA GI, YAKA BALAŊ NHE FEEL PRESSURED YORANHARAW. DHARAŊŊUL ŊURRUŊU NHAKU NHE GA YORAM GA GURRUPAN NHUŊU CONSENT.
Nhaltjan ŋarra dhu consent-tja gurrupan?
Märrma’ dhukarr gurrupanaraw consent-kuny:
Wukirripuy consent – Nhe dhu sign form ŋunhiyi ga ḻakaram nhe ga dharaŋan warrpam’ ga yoram nhe test-ku.
Dhärukpuy consent – Sometimes, nhe mak balaŋ need gurrupanaraw nhuŋu consent-ku ga yakan sign ŋulanha.
Manymak balaŋ ŋarra djambi ŋarrakuwuy guyaŋinyawuy yalala?
Sometimes, nhe mak balaŋ djambi nhuŋu guyaŋinyawuy ŋunhiyi nhakun nhe ḻiŋgun signing-nha consent form-dja. Beŋuriny dhu happens ŋunhiyi dhu depends on balanya mala:
- Nhämunha’ ŋunhiyi genetic test-tja ḻiŋgu djäma
- Wanha nhe state wo territory-ŋur
- Wanhan nhuŋu sample ga DNA-dja
Ŋurruŋuwaldja Yolŋuwal nheny balaŋ waŋi nhokal marrŋgitjkal wo genetic counsellor-wal.
Nhä incidental finding-dja?
“Incidental finding”-dja balanyamirriy genetic test-thu li milkum ŋulanha unexpected nhokalaŋawuy health-puy. Balanyamirriy nhe dhu gurrupan consent, nhen dhu djarr’yun wanha nhe djäl wo yaka djäl maḻŋ’maranharaw ŋurukiyi findings-gu. Incidental findings-dja yaka li maḻŋ’maram warrpam’kal, yurr still ŋunhiyi important waŋanharaw nhokal marrŋgitjkal wo genetic counsellor-wal.
Bäki balaŋ ŋarraku genetic data research-ku?
Balanymirriy nhe dhu djuy’yun sample genetic testing-gu, ŋuruŋi wala ŋunhiyi ga djäka ŋurukiyi protect dhu yan.
Yaka walal dhu share wiripuwal.
Nhuŋuny DNA ga genetic test results-dja protected. Ŋuruŋiyin balaŋ health professionals-dhu ŋunhiyi ga guŋga’yun nhunany access-dja balaŋ gi ŋunhiyi.
Sometimes, nhokal marrŋgitjthu balaŋ ŋäŋ’thurr nhunany wanha nhe djäl join-gu research project-lil. Balanyaray balaŋ guŋga’yurr scientists-nha mala marŋgithinharaw bulu health conditions-gu ga djäma yuṯa mirritjin’ mala.
Ŋunhiyi nhe yoram, nhuŋu sample wo test results mak balaŋ shared researchers-wal mala, yurr nhokala permission-dhu yän. Make sure nhe dhu ŋäŋ’thun questions mala yorrnha djarr’yurr ga guyaŋa gi bawalamirriy nhe dhu yakayun ŋunhiyi nhe yaka sure.
Nhä data sovereignty-ny?
Nhuŋu genetic data-ny valuable knowledge.
Data sovereignty-ny mayali’ Indigenous Yolŋuy mala ga ŋayatham right own-gu, control ga protect walalaŋ data-w.
Dhiyaŋuny li ensures nhayi dhuka communities-dhu djarr’yun nhaltjan dhuka genetic information collected, bäki, ŋorra ga shared romgurr ŋunhiyi ga respect walalaŋ values, knowledge systems ga governance.
Data sovereignty-ny especially important genomics-ŋur, bili guŋga’yun li safeguard cultural identity mala, ḏälkum community decision-making, ga ensure research-thu li benefit Indigenous people-nha mala.
Dhiyaŋuny bala, some ga rules ŋorra guŋga’yunaraw Yolŋuw access-gu ga control-gu walalaŋ genetic information-gu, yurr bäyŋu lika bitjan bili meet needs mala Indigenous communities-gu. Ŋuthan ga effort various groups-ŋur mala djambiw nhaltjan dhuka genetic data ga samples managed, ŋunhiyi ga focus ensuring-gu Indigenous data sovereignty-ny fully respected
Bulu maḻŋ’maranharaw, visit the Maiam nayri Wingara website scanning-dhu dhiyak QR code.