Genomics Bioethics ‘Key Questions’ Postcard Series
Key questions to engage with
Genomics What%is%a%genome?% Your%genome%is%one%whole%set%of%all% your%genes%plus%all%the%DNA%between% your%genes.%There%are%around%20,000% genes%in%your%genome.%
What%is%genomics?% Genomics%is%the%study%of%the%whole% genome%and%how%it%works.%It%also%has% a%broader%meaning%to%include%the%way% that%the%genome%is%interpreted%and% the%technologies%which%have%been% developed%because%of%it.%
Did%you%know?% • 80%%of%rare%diseases%are%genomic%[a].% • Over%330,000%new%cases%of%cancer%are% reported%every%year%[b].%%
What%does%the%future%hold?%% •
•
Why%take%an%interest?% Who%should%pay%for%geneKc%tests?% Could%people%be%discriminated%against%in%light%of%their%geneKc%informaKon?% Should%medical%DNA%records%be%released%to%the%police?%% Should%parents%be%allowed%to%view%their%children's%genomes%when%this%could%reveal% unexpected%paternity%or%more?% • Do%we%have%a%right%to%know%about%alarming%but%uncertain%or%not%acKonable%data?%% • • • •
%
[a]%hWp://www.raredisease.org.uk/aboutPrarePdiseases.htm% [b]%hWps://www.genomicsengland.co.uk/theP100000PgenomesPproject/% [c]%hWp://www.newscienKst.com/arKcle/mg21929333.100PyourPgenomicPfuturePpersonalisedPmedicinePisPhere.html?full=true#.U9toe_nIbpo%%
Personalised+medicine+P%Doctors% could%potenKally%idenKty%the% subtle%geneKc%variants%that%are% triggering%certain%symptoms.% Drugs%that%have%been%specifically% designed%to%target%these%exact% symptoms%can%then%be% prescribed%to%correct%the% biochemical%pathways%[c].%% The%100,000+Genomes+Project+ aims%to%sequence%100,000% genomes%through%NHS%England% by%2017,%with%a%focus%on%rare% diseases,%cancers%and%infecKous% diseases%[b].%It%is%anKcipated%that% collaboraKon%with%academia%and% industry%to%interpret%clinical%and% genome%data%will%aid%the%longP term%development%of%new% medicines.%
Genomics Bioethics ‘Key Questions’ Postcard Series
Key questions to engage with
Genomics What%is%a%genome?% Your%genome%is%one%whole%set%of%all% your%genes%plus%all%the%DNA%between% your%genes.%There%are%around%20,000% genes%in%your%genome.%
What%is%genomics?% Genomics%is%the%study%of%the%whole% genome%and%how%it%works.%It%also%has% a%broader%meaning%to%include%the%way% that%the%genome%is%interpreted%and% the%technologies%which%have%been% developed%because%of%it.%
Did%you%know?% • 80%%of%rare%diseases%are%genomic%[a].% • Over%330,000%new%cases%of%cancer%are% reported%every%year%[b].%%
What%does%the%future%hold?%% •
•
Why%take%an%interest?% Who%should%pay%for%geneKc%tests?% Could%people%be%discriminated%against%in%light%of%their%geneKc%informaKon?% Should%medical%DNA%records%be%released%to%the%police?%% Should%parents%be%allowed%to%view%their%children's%genomes%when%this%could%reveal% unexpected%paternity%or%more?% • Do%we%have%a%right%to%know%about%alarming%but%uncertain%or%not%acKonable%data?%% • • • •
%
[a]%hWp://www.raredisease.org.uk/aboutPrarePdiseases.htm% [b]%hWps://www.genomicsengland.co.uk/theP100000PgenomesPproject/% [c]%hWp://www.newscienKst.com/arKcle/mg21929333.100PyourPgenomicPfuturePpersonalisedPmedicinePisPhere.html?full=true#.U9toe_nIbpo%%
Personalised+medicine+P%Doctors% could%potenKally%idenKty%the% subtle%geneKc%variants%that%are% triggering%certain%symptoms.% Drugs%that%have%been%specifically% designed%to%target%these%exact% symptoms%can%then%be% prescribed%to%correct%the% biochemical%pathways%[c].%% The%100,000+Genomes+Project+ aims%to%sequence%100,000% genomes%through%NHS%England% by%2017,%with%a%focus%on%rare% diseases,%cancers%and%infecKous% diseases%[b].%It%is%anKcipated%that% collaboraKon%with%academia%and% industry%to%interpret%clinical%and% genome%data%will%aid%the%longP term%development%of%new% medicines.%