Transcript It’s all in the genes – cautionary tails from consumer

It’s all in the genes – cautionary
tails from consumer perspectives
“He [Benjamin the donkey] would say that God
had given him a tail to keep the flies off, but he
would sooner have had no tail and no flies”.
Animal Farm
The use of genetics in NZ’s sheep
breeding industry
‘Genetics is very much
about having large
numbers of animals so
you can select the elite
population and multiply
them up to produce the
next generation
effectively’
Drivers for change in the sheep
breeding industry
• From the farmers’ perspective:
Improved product quality and production efficiency that
improve the financial ‘bottom line’
• From the consumers’ perspective there are increasing
demands and expectations for:
lean meat
quality and consistency in terms of taste, tenderness
and cut size
year round supplies
and
assurances about animal welfare and environmentally
safe practice
Gene markers in use in NZ’s sheep
breeding industry
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MyoMax – leaner, meatier carcasses
LoinMax – meatier loin muscles
Inverdale – increased fertility
Shepherd – DNA-based parentage system
i-Scan – test for recessive eye disorder Micropthalmia to detect
breeding carriers
• Wormstar – resistance to sheep worms
• Marker for cold tolerance
Ram 671
Very good at his job and good genes to boot
• 671 is 20% better than the
average ram
• 671 produces lambs that
grow well and have the
expensive meat cuts in
abundance
• 671 won’t be sold as his
genes are worth too much as
a sire
Rissington Breedline
• Developed and trademarked two breeds of sheep to better meet
market/consumer demands
• Maternal breed or ‘ewe factory’ has maternal attributes –
fertility, hardiness, survivability
• Terminal breed has meat characteristics
• All lambs electronically tagged at birth
• At tailing, blood sample is taken from the tail and genetically
profiled; information held in a database
• Tag scanned and matched with blood sample
• Information determines the selection of an elite population for
the breeding programme
Newborn Metabolic Screening
Programme (NMSP)
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Heel prick at birth; blood spots collected on Guthrie cards
Detects possibility of early onset genetic disorders
Is an indirect method of genetic screening
Dried blood spots are currently stored indefinitely
More than 2 million samples in the collection
Potentially comprises DNA profile of almost every person in
NZ, born since the programme began in 1969
• Privacy concerns around use of the information and,
• Secondary uses of the samples, now and into the future, given
advances in technology and likely decreasing cost of that
technology
A Mother’s privacy concerns
• Daughter, G, identified as Cystic Fibrosis (CF) carrier through
NMSP a few years ago. News had a very raw impact.
• Mother accessed information about CF and carrier status from
Internet, midwife, and child’s paediatrician
• No one has ever offered genetic counselling to the parents –
maybe that is OK
• Mother sought blood test and tested –ve for CF carrier status
• Father refused to be tested, but has to be assumed he is the +ve
CF carrier
• He did make an attempt to tell his wider family, but the feeling
is ‘they didn’t get it’.
A mother’s privacy concerns
• Mother made decision not to tell anyone about G’s CF carrier
status other than her parents, and myself
• Mother maintains the information ‘belongs’ to G, so G should
have the most say about whom she tells
• Mother will tell G once G has reached an age where she can
understand
• Information about G’s CF carrier status is on GP, Hospital,
Well Child, and National Testing Centre records
• Mother may retrieve G’s Guthrie card from NTC as she has
concerns about the blood spots being accessed for secondary
purposes without her knowledge and/or consent. But she
maintains confidence in NMSP and its primary purpose.
The drivers for change and concerns
for the future
With increasing focus on population health, increasing
pressure on health spend, and the availability of cheaper
genetic technology that may be applied across populations,
there are additional uncertainties for G, particularly as she
reaches reproductive age. There are risks particularly around
stigmatisation; and
loss of reproductive choices or direction/requirement over
which reproductive options will be available to her,
irrespective of the genetic make-up of her partner. This
could be made better, or worse, by legislative and/or
societal change.
Wider privacy concerns
• Those with an interest in genetic information are not limited to
individuals, families, geneticists and clinicians
• Third party interests include researchers and epidemiologists,
the police in cases of victim identification, paternity cases
• Should NMSP ever be expanded to include genetic profiling at
birth there will be even more pressure from third parties for
access and other, as yet unspecified, uses
• Other third parties with interests – health and life insurers,
banks, employers, pharmaceutical companies, other
commercial interests and,
• Funders and planners of health services, Government agencies
Legislative and/or regulatory change
• Wider discussion and debate are required in the public arena
around ‘Genes, Society and the Future’
• The public/consumers should have an active and valued role in
decision-making around introduction and/or use of new
genetic technologies; the public good; determining boundaries
beyond which our society shall not go
• While legal protection of samples held as part of NMSP is
mooted, it may be that legislation around use of any/all genetic
information as well as reproductive choices will/should be
revisited
• Legislative decisions should not be the realm of the few who
hold the power, the influence and the vested interests
“Even when I was young I could not have read what was
written there. But it appears to me that that wall looks
different. Are the Seven Commandments the same as they
used to be Benjamin?’……..
For once Benjamin consented to break his rule, and he read out
to her what was written on the wall. There was nothing there
now except a single Commandment. It ran:
ALL ANIMALS ARE EQUAL,
BUT SOME ANIMALS ARE MORE EQUAL THAN
OTHERS”
Animal Farm
Acknowledgements
Mother of G
Manawatu Standard
Sharlene and family
for spring lamb photos
Local farmers
Catapult Genetics
George Orwell
Barbara Robson
Health Consumer Advocate
Feilding
25 August 2008