Warlpiri
Nyiya rare genetic condition-ji?
Nyiya DNA-ji manu nyiya piya yimi ka mardani?
Meet-i maninjaku counsellor
Questions wati kuja karlipa jana payirni
Questions wati kuja karlipa jana payirni
1. DNA, Chromosome, manu Genes
Nyiya DNA-ji?
DNA-ji instructions yangka kuja kangku ngarrirni nyuntu nyangu body nyarrpa ka wiri jarrimi, warrki jarrimi manu karri.
Full name-ji Deoxyribonucleic Acid marda DNA.
DNA-ji palka mani kalu living things watirla. Yapangka, animals-rla manu plants watirla witarlangu bacteria!
Information ka mardani kuja kajana help mani living things wati survive jarrinjaku bloodline-rla manu traits-rla kurdungka.
Traits-ji nyuntu nyayirni palka.
Physical, yangka jurru milpa color manu yangka blood type-rlangu.
IKajinpa picture nyanyi DNA kirli kapunpa nyanyi wirlki wirlki ladder piya. Scientists watirliji kalu yirdi mani double helix.
Steps wati ladder-ngkaju kalu ngurrju mani special chemicals-rlu kuja ka act jarrimi code piya nyuntu nyangu body-rla. Special chemicals nyampurrajulu yirrarnu documents watirla.
Nyarrpara jangka DNA-ji?
DNA-ji kalu pass-i mani bloodline-rla ngati nyanu manu kurdungku.
Half kari DNA ngati jangka half kari kirdana jangka. Marda kanpa kirdana kurlangu milpa mardani marda kanpa ngati piya jurru mardani.
Nyuntuku purdangka jarra marda DNA ngati manu kirda nyanu jangka jurrku jangka kala lawa same mix-kiji. Kuja jangka marda kankulu jurrku wati jiki nyina, yangka identical wangu.
Nyuntuku palangu jarrarlu pala manu DNA nyanungu jarraku palangu jangka. Kujaju nyuntu nyangu ancestor kurra kangku connect-i mani thousands of years jangka.
Nyarrpararla kalu palka mani DNA-ji?
DNA-ji kalu palka mani nyuntu nyangu cells-rla wita building blocks kuja ka body nyuntu nyangu ngurrju mani.
Cells warrki jarrimi ka pala mapirri nyuntu nyangu skin ngurrju maninjaku, muscles ku yungkurnu ku manu organs ki. Cells watirli kalu warrki special mardani.
Muscle cells-rli kangku help mani yurrurinjaku; lung cells-rli kangku help mani breathe jarrinjaku; manu skin cells protect maninjaku body-ki.
Different cells-rli ka use-i mani different instructions nyuntu nyangu DNA jangkaju warrki kiji.
Nyiya chromosome-ju?
DNA-ji kirrirdimpayi string piya. Kajilpanpa stretch-i mantarla DNA ngulaju kaji ka 2 metres karri!
Punku jarrinja kujaku manu twisted jarrinja kujaku, ngalipa nyangu cells-rli ka pack-i mani muku nglipa nyangu DNA-ji wita package kirra. Package nyampurraju yirdiji “chromosomes”. Mardani kalu different part nyuntu nyangu DNA.
“Photo” marda nyuntu nyangu chromosome kurlu ngulaju marda nyampu piya:
Yapangku 46 chromosome, 23 ngati jangka, 23 kari kirdana jangka.
Chromosome kuju kalu jana numbers yinyi yangka wiri japa marda kujaju. Ngati nyanu
manu kirdanarlu kalu nyarra copy yinyi chromosome number.
Chromosome kurlangu yirdiji “X” manu “Y” ngulaju special. Yirdiji “sex chromosome”
nyuntu nyangu sex ka mardani mardanpa wirriya marda karnta-npa palka jarrija.
Nyiya letters wtiji A, C, G manu T ji?
DNA-rliji ka mardani special code four pala letters kurlu: A, C, G manu T.
Letters wati nyampurraju yirdi chemicals-ku kanunju nyuntu nyangu DNA-rla:
A = adenine
C = cytosine
G = guanine
T = thymine
A ka pair jarrimi T kirli
C ka pairs jarrimi G kirli
Letters wati nyampurrarluju kalu yirdi ngurrju mani kujaka body-rli use-i mani instructions manu function-ki.
A T G T T A G G C T G
Yapangku kalu mardani jurrku DNA-ji spelling watirli kalu ngalpa ngurrju mani instructions manu unique mani.
A T G T T C G G C T G
Nyampurra wita differences-rli kapungku help mani height-ki hair color-ku manu taste-ki mangarriki!
A T G T T T G G C T G
Kaji spelling mistake karrimi instructions rla kaji ka body-ji nyurnu jarrimi manu warla pajirni nyiyakujaku-rlangu.
Nyiya gene-ji?
MILYA PINYI MAYI KANPA?
Gene-ji wita DNA kuja ka mardani instructions warrkiki nyuntu nyangu body-rla.
Yapangku ka mardani 20,000 genes!
AAGTCCATGC ... TTCGAGATCC ... GATTCCAGTA ...
Gene-ji kalu ngurrju mani unique section DNA-rla A, C, G manu T jangka sentence piya letters watirla alphabet-rla.
Nyarrparlu kaji ka genes-rli affect-i mani ngaju nyangu health?
Witangku change-rli DNA-rlarlu kula ka problem ngurrju mani. Change gene-rlarlu kaji ka warrki jarrinja kujakuju lawa mani. Kujarluju kajika yapangkuju health condition mani.
Health condition-ji ka run jarrimi family-rla kuja kalu pass-i mani DNA.
Diabetes manu cancer-ju common nyayirni families watirlaju.
Gene-ji kaji ka change jarrimi yapa jintangka nyanungurra jangka bloodline jangka.
Important milya pinjaku nganangku kulalpa control mantarla genes warrki jarrinjakuju.
Kaji kula gene warrki jarrimi junga, nati nyampu fault yapa kurkangu.
Manu yangka kajinpa gene change mani ngulaju natilpanpa warrarda nyurnu jarriyarla.
Marda chances ka high marda karrimi.
Nyiya difference-ji genetics-ki manu genomics-kiji?
Jurrku jarra juku jala, genetics manu genomics-ji different.
Genetics-ji
study jinta marda wirrkardu genes.
Traits piya yangka kuja kalu jana pass-i mani ngatingki manu kirdanarlu kurdu kurra manu nyarrparlu kaji ka affect-i mani genes-ngki health-ji.
Genomics-ji
study yapa panu kurlangu genes kirli mapirri.
Nyanyi ka nyarrpa kapala interact jarrimi genes jarraju.
2. Genetic Testing Explained
Nyiya genetic testing-ji?
Genetic testing-ji special type health test-kiji nyuntu nyangu DNA-rlaju. Help mani kajana doctors wati milya pinjaku nyuntu nyangu genes yangka kajingki affect-i mani nyuntu nyangu health. Nyampurlaju ka jana yinyi help best care yinjaku nyuntuku.
Nyarrparlu kaji kaju help mani genetic testing-rliji?
Genetic testing-rli marda kapungku help mani different situation-rla yangka:
Palka mani answers: Kajinpa nyurnu nyina manu health test-rli natingkili ngarrurnu nyiya jangkanpa, genetic testing-rli marda kaji ka help mani doctor-ju milya pinjaku.
Family history: Health conditions marda ka run jarrimi nyuntu nyangu family-rla, genetic testing-rli kapungku milki yirrarni risk-rla japanpa.
Milarni jungarni treatment-ki: Medicine ngalya kariji ka warrki jarrimi ngurrju yapa kuju. Genetic testing-iki kajana helpi-mani doctors-wati-ki yangka decide-jarrinjaku nyiyapiya treatment marda ngurrjuju kajikangku warrkijarri nyuntukuju yangka cancer-kurlu-rlanguku.
Kurdu pirltirrkaku ngarnti: Kajinpa kurduku purda jarrimi genetic testing-rli marda kaji ka nyanyi nyuntu nyangu kurdungku kajika mani yijala condition-ji.
Nganarna nyanyi genetic test-ki ngarntiji?
Kajinpa ngampurrpa jarrimi genetic test-ki, kamparruju wangkayarla health profession-ki. Nyampuju marda local community health worker, GP marda yapa health worker.
Kapungkulu help mani milya pinjaku genetic testing-ki marda useful nyuntu-kuju yungungku guide-I mani nyarrpa jarrinjaku ngaka.
Marda kaji kangkulu yilyami:
Specialist doctor kurra: nyampuju doctor extra training jangka health area wana, genetics-rla brain-rla neurologist marda rduku-rduku cardiologist. Marda kaji kalu yarda mani test genetic testing-ki.
Genetic counsellor: Genetic counsillors watiji kalu nyina trained health professionals kuja ka ngalpa ngarrirni nyarrpa ka warrki jarrimi genetic testings-ji.
Nyarrpa yangka kajingki ngarrirni manu ngarrirninja wangu, manu nyarrpa kaji ka results mean jarrimi nyuntuku manu nyuntu nyangu family-ki. Kapungkulu support-langu yinyi testing-ki ngarnti manu testing jangka. Click-I manta nyampurla yungunpa maya pina jarrimi genetic counselling kirli.
Health professionals wati: nyuntu nyangu health kirli-rliji kaji kanpa jana nyanyi specialists kari, yangka paediatrician (kurdu-kurdu kurlangu health-ki) oncologist (cancer kurlu watiki) marda reproduction specialist (miyaluku karntaku manu fertility-rlanguku test-ki).
Nyuntu nyangu doctor marda health worker, kapungku help-I mani connect-I maninjaku right people kurluku.
Kajinpa ngampurrpa nyina pina jarrinjaku health professionals watiki kuja kalu involve jarrimi genetic testing-ki, click-I manta nyampurla.
Nyarrpa ka warrki jarrimi genetic testing-ji?
Genetic test-ki ngarntiji, kapungkulu wangkami health professional, yangka doctor marda genetic counsellor, wangkami kapungkulu test nyiya piyaku. Kapungkulu ngarrirni process kirli manu kapungkulu answer mani questions watiji. Kapunpa mani testing-ji kajinpa jana yinyi nyuntu nyangu permission yangka consent.
Kajinpa ngungkurr-nyina, yungka jana wita ngari sample. Nyampuju marda yalyu, marda nyunypa, marda swab kajingkili yirrarni lirrangka, manu marda wita skin. Manu marda kaji kalu jinta kari-rlangu mani sample-ju.
Nyuntu nyangu sample kalu yilyami laboratory kirra, kuja kalu scientists-rli use-I mani special machine nyuntu nyangu DNA nyanjaku.
Kapulu check-I mani nyuntu nyangu genes yangka changes-ki marda kaji ka ngalpa ngarrirni nyuntu nyangu health condition, future health risk marda manu marda help-I mani treatment options-ku.
Tarnnga yangka, witan gari DNA nyuntu-nyanguju kapulu nyanyi- yangka ngari section kuja link jarrimi nyuntu nyangu health issues kuja ka nyanyi doctor-rlu. Manu marda kaji kalu nyuntu nyangu DNA-ji nyanyi, ngari yangka doctor-ku nyanjaku nyiya jangka kanpa mani symptoms watiji.
Genetics-ji complex, health professionals watirli marda kaji kalu involve jarrimi nyanjarla manu ngarrirninjarla nyuntu nyangu results kurlu. Scientists, genetic specialists manu researchers watirli marda kaji kangkulu help-I mani results watiji yangka jungarni. Process-ji pulya- marda weeks marda months- yangka kajingkili nyiya piya test yinyi.
Results kaji ready karrimi, nyuntu nyangu doctor marda genetic counsellor-rlu kapungku milki yirrarni nyuntu-kuju. Kapungkulu ngarrirni nyiya ka mean jarrimi results nyuntu nyangu manu nyuntu nyangu families-ki manu wangkaya step jinta karikilki, yangka treatment manu testing.
3. Manngu-nyangka wiyi jungangku Genetic Testing-ki ngarntiji
Nyarrpangkurna mani support-ju?
Genetic testing-ji overwhelming nyayirni. Marda panu kurlu information kirli nyuntu-kuju? Nyampu kula ways yangka process easy maninjaku.
Kangka yapa jinta kari nyuntu kurlu. – Support yapa, marda interpreter kaji kangku help-I mani pirrjirdi nyinanjaku important questions puru.
Palka manta advocacy group – Organisations wati kalu palka karrinjaani state-rla manu territory-rla support-kuju nyuntu-kuju. Click-I manta nyampurla map-ki.
Mapirri nyina family manu friends kirli – kaji kangukulu emotional support yinyi, manu yangka genetic testing-ji important yijala nyanungurra kuju.
Nyajangu genetic testing-ji?
Cost genetic testing-kiji ngulaju yangka kalu depend jarrimi test-ki nyiya piyaku. Marda test-ji kalu cover mani Medicare-rli marda territory government-rli. Nyuntu nyangu doctor manu genetic counsellor-rlu kapulu nyarra explain-I mani nyuntu nyangu options kurluju.
Kapu mayi ngaju nyangu genetic testing-rli affect-I mani ngaju nyangu insurance-ji?
Kajinpa mardani genetic test marda kanpa mani nyuntu nyangu results-ju, kujarluju kula change-I mani health insurance-ji manu nyajanguku kajinpa pay mani. Kala nyampu Australia-rla rules wangu ka karrimi warla pajirninjaku life insurance companies wati nyuntu payirninja-kujaku genetic testing-ki marda milki yirrarninjaku results-ku. Marda kaji kangkulu check-I mani kaji kanpa marda high chance health problems kurlu kuja ka run jarrimi family-rla marda cancer manu jinta kari illness.
Australian Government-rli kalu plan-I mani new rules yapaku warra-warra kanjaku. Rules nyampurrarluju kalu nyanyi life insurance companies wati yangka natilpa-ngkulu mantarla genetic testing manu results-ku kajinpa apply jarrimi policy-ki.
Maya pina jarrinjaku yanta: Ban on the use of adverse genetic testing results in life insurance | Treasury.gov.au kurra.
Nganangku kapu mani ngaju nyangu test results-ju?
Nyuntu nyangu test results-ju kaji ka mani health provider-rlu manu nyunturlurlu. Yungka jana consent nyuntu nyangu yapa kariki maninjalu test results-ku. Yardanyangka pinajarrinjaku consent-kirli nyampu-jangkarlu.
4. Consent
Nyiya consent-ji?
Consent-ji yangka yinyi kanpa jana permission. Informed consent-ji yangka kuja kanpa jungangku milya pinyi nyiyaku kanpa agree jarrimi wangkanjaku ngarnti. Kujaju yangka kujangkulu ngarrrurnu ngungkurr-nyinanjaku ngarnti.
Genetic testing-ki ngarnti, doctor-rlu manu genetic counsellor-rlu yungulu nyarra ngarrirni kuja:
- Nyarrparlu kaji kangku testing-rli help mani
- Nyiya ka mean jarrimi results-ju nyutnuku manu nyuntu nyangu family-ki
- Nyarrpara kurra kapulu yilyanjarla mardani nyuntu nyangu DNA-ji
- Nganagku kaji ka nyanyi nyuntu nyangu test results-ju
NATI NYANU PRESSURED PURDANYANGKA YES WANGKANJAKU. MILYA PUNGKA WIYI NYIYAKU KANPA AGREE JARRIMI CONSENT-KI NGARNTI YINJAKU NGARNTIJI.
Nyarrparlu-rna jana yinyi consent-ji?
Jirrama waya kaji kanpa jana yinyi consent-ji:
Written consent – Kapunpa sign-I mani form yangka kuja kanpa milya pinyi manu agree jarrimi test-ki.
Verbal consent – Marda kaji kanpa jana yinyi consent-ji sign-I maninja wangurlu-rlangu.
Change-I mani mayirnaju mind-ji?
Marda kaji kanpa change-I mani mind-ji ngakalku sign-I maninja warnurlu consent form jangkarlu. Nyarrpalku yangka kajirnarla depend jarrimi nyampurra-kuju:
- Nyajangu genetic test-jili manu
- Nyarrpararla state marda territory-rla nyuntuju kanpa nyina
- Nyarrpararla nyuntu nyangu sample manu DNA-ji
Wangkayarla nyuntu nyangu doctor-ku marda genetic counsellor-ku.
Nyiya incidental finding-ji?
“Incidental finding-ji” kajingki genetic testing-rli milki yirrarni nyiya mayi nyuntu nyangu health kirli.
Kajinpa jana consent yinyi, milaka ngampurrpa japa kanpa nyina nyampurraku findings-ki. Incidental findings-ji kula ka jana happen jarrimi yapa panuku, kala important ka karri yungunparla nyuntu nyangu doctor-ku wangkami manu genetic counsellor-ku.
Genetic data ngaju nyangu kaji kalu use-I mani mayi research-rlaju?
Kajinpa yilyami sample genetic testing-ki, kardiyarlu yungulpalu mampungku mardakarla. Natilpalu share-I mantarla yapa kari kirlirli.
Nyuntu nyangu DNA manu genetic test results kalu mampu mani. Kaji ka mani health professional-rlu mipa yangka kangku help mani nyuntu.
Marda kaji kangku doctor-rlu payirni join-I maninjaku research project-ki. Nyampurluju kapu jana help mani scientists pina jarrinjaku maya health conditions-ki manu ngurrju maninjaku jalangu warnu medicine-ki.
Kajinpa ngampurrpa jarrimi, nyuntu nyangu sample marda test results marda kaji kalu share-I mani researchers wati kirlirli, nyuntu nyangu permission kirlirli. Payika jana questions kajinpa decide jarrimi manngu nyangka wangkaya no kajinpa pina wangu nyina.
Nyiya data sovereignty-ji?
Nyuntu nyangu genetic data-ju valuable knowledge.
Data sovereignty-ji yapangku kuja karlipa mardani rights, own-I maninjaku, control-ku manu protect maninjaku data-ku.
Kujaju yangka nyarrparlu kaji kalu community-rli milya pinyi kuja kalu mani genetic informations-ji, use-I mani store mani manu share-I mani values wati knowledge manu governance.
Data sovereignty-ji important nyayirni genomics-rlaju, help mani ka safeguard maninjaki cultural identity, community pirrjirdiki, manu research benefits yangka yapa patuku.
Palka ka karri rules wati yangka help maninjaku yapaku maninjaku manu control maninjaku nyanungurra nyangu genetic information-ji. Kala nati kalu kuja jarrimi yangka yapa kurlangu community needs watiki. Growing effort ka karri groups wati jangka yangka change-I maninjaku genetic data-ku manu samples-ku manage maninjaku, focus jarrinjaku yapa kurlangu data sovereignty-ji yungulu respect mani.
Maya pina jarrinjaku, nyangka Maiam nayri Wingara website kajinpa scan-I mani QR code.