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

1. 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

2. 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’

3. 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

4. Gene markers in use in NZ’s sheep breeding industry • 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

5. Ram 671Very 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

6. RissingtonBreedline • 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

7. Newborn Metabolic Screening Programme (NMSP) • 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

8. 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’.

9. 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.

10. 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.

11. 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

12. 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

13. “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

14. 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