Rels 300 Nurs 330 14 January 2016 300330 appleby 1 Dominant Patterns of Genetic Inheritance Huntingtons Disease People atrisk for the disease face a difficult choice about genetic testing for HD given the current absence of an effective treatment or cure Many people ID: 779985
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Ethical Issues in Genetics and Genetic Therapies
Rels 300 / Nurs 33014 January 2016
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Slide2Dominant Patterns of Genetic Inheritance – Huntington’s Disease
“People at-risk for the disease face a difficult choice about genetic testing for HD, given the current absence of an effective treatment or cure. Many people see no benefit in knowing that they will someday develop the disease. Others want an end to uncertainty so that they can make informed choices about the future. The decision whether to test or not is intensely personal and there is no "right" answer.”
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https://www.youtube.com/watch?v=dw-raR6E9zU&list=PLpMgTX_sXoj6kA9i-04a126NP7zGSY-hA&index=1
http
://hdsa.org/what-is-hd/
Slide3Recessive Patterns of Inheritance – Cystic Fibrosis
“Cystic fibrosis is the most common fatal-genetic disease affecting Canadian children and young adults. Cystic fibrosis affects mostly the lungs and digestive system, but cystic fibrosis also affects the sinuses, liver, pancreas and the reproductive organs. The degree of CF involvement varies from person to person. However, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function eventually causes death in the majority of people who have cystic fibrosis.”
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http
://www.cysticfibrosis.ca/?
lang=en
https://
www.youtube.com/watch?v=oE9BUuv2pTo&list=PLpMgTX_sXoj6kA9i-04a126NP7zGSY-hA&index=2
http://www.vvcnetwork.ca/cf/20120501/
Slide4X-linked Patterns of Inheritance –
Fragile X Syndrome https://www.youtube.com/watch?v=20AzpPybnB4&list=PLpMgTX_sXoj6kA9i-04a126NP7zGSY-hA “As
well as learning disabilities, common behavioural features include short attention span, distractibility, impulsiveness, restlessness, over activity and sensory problems. “Many
children and adults show autistic like features, including: avoiding eye contact, anxiety in social situations, insistence on familiar routines and hand flapping or hand
biting…A
substantial minority of individuals with fragile X will show greater problems relating to others and may receive a dual-diagnosis of autism. Speech and language are usually delayed with continuing speech and communication problems. Some children and adults develop epilepsy
.”
http://www.fragilex.org.uk
/
http://
www.fragilexcanada.ca/index.php?home&lng=en
https://www.youtube.com/watch?v=_
byqoPW_XFk
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Slide5Personal Choices /
Moral Duties?If you have a history of Huntington’s Disease in your family, w
ould you have genetic testing to see if you will develop the illness
?
If you have a history of
Cystic Fibrosis
in your family, w
ould
you have genetic testing to see if you
are a carrier for
this illness?
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If you have a history of
Fragile
X
S
yndrome
in your family
w
ould you have genetic testing to see if you are at risk of passing on this illness?
Slide6Take another look at your list of genetic conditions & diseases:
Which of these ethical issues would be of concern to a person with the genetic condition you have investigated:Privacy and ConfidentialityInsurabilityEmployabilityChildbearingWhat additional ethical issues or dilemmas might you expect to face if you were living with a diagnosed genetic condition?300/330 - appleby
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Slide7Canadian Legislative Efforts
October 1, 2012: BILL C-445 – An Act to amend the Canadian Human Rights Act (genetic characteristics); MP Libby DaviesApril 17, 2013: BILL S-218 – An Act to prohibit and prevent genetic discrimination; Senator James CowanOctober 20, 2013: BILL S-201 – An Act to prohibit and prevent genetic discrimination; Senator James Cowan
June 9, 2015: BILL C-68 – An Act to amend the Canadian Human Rights Act, the Privacy Act and the Personal Information Protection and Electronic Documents ActDecember 8, 2015:
BILL S-201
– An
Act to prohibit and prevent genetic discrimination; Senator James Cowan
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Slide8Canadian Legislation - Senate
BILL S-201: An Act to prohibit and prevent genetic discriminationThis enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test
as a condition of providing goods or services to, entering into or continuing a contract with, or offering specific conditions in a contract with the
individual
e
xceptions for
medical
practitioners,
researchers,
& providers
of high-value insurance
contracts
amends the Canada
Labour
Code to
protect employees from being required to
undergo or to disclose the results of a genetic
test
amends
the Canadian Human Rights Act to prohibit
discrimination on the ground of genetic
characteristics
http://
www.parl.gc.ca/HousePublications/Publication.aspx?Language=E&Mode=1&DocId=8063161&File=24#1
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Slide9Brynne
Stainsby grew up knowing she had a good chance of being diagnosed with Huntington’s disease one day.Her father has the gene that causes the degenerative brain disorder, so she was born with one-in-two odds of developing it herself…While Dr. Stainsby, a Toronto chiropractor, … didn’t realize that simply coming from a family with a history of Huntington’s disease could disqualify her for life or disability insurance. As she was preparing to start her own practice, she learned that it would be extremely difficult, if not impossible, to get covered if she indeed had the genetic variant that causes the disease.
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Health insurance and 'genetic discrimination': Are rules needed?
CARLY WEEKS
The Globe and Mail
Sunday
, Jan. 01
2012
Slide10Genetic Therapies
What is a stem cell? http://vimeo.com/74878202 What’s so great about a stem cell?Stem cells have the ability to replicate themselvesBone marrow contains stem cells that produce red blood cells throughout a person’s life; skin stem cells constantly replenish the skin which is shed and replaced in a constant cycle of regeneration; muscle stem cells repair damaged muscle cells
Where will researchers get stem cells?In 1999, Canadian researchers developed a stem cell treatment for Type 1 diabetes; the Edmonton Protocol involves the implantation of pancreatic islets.The problem, however, was finding an adequate source of pancreatic stem cells; pancreases from 2 organ donors was needed to produce enough stem cells for 1 patient
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Slide11What are embryonic stem cells?
http://vimeo.com/75258017 Stem cell research and IVF research convergeTotipotent cells = cells of the very early embryo that differentiate into the placenta, the embryo, and all fetal tissues and organs; currently, it is not possible to continue the growth of totipotent cells
Embryonic stem (ES) cells = stem
cells
that form within the
inner cell mass of
a 4-5 day old embryo; may be induced to develop a wide range of cells (pluripotent)
Where do embryonic stem cells come from?
Fetal tissue from miscarriages or abortionsIVF embryos not needed for procreative purposes; surplus frozen embryos; embryos created for research purposes
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Slide12Adult Stem Cells
Adult stem cells = cells which are already differentiated or specialized, e.g., neural or skin cellsThis may make them less adaptable in producing desired cell growth, e.g., as pancreatic islet cells or muscle tissue Embryonic stem cells replicate more easily in culture, and an embryonic stem cell line can be sustained for a longer period of time than an adult stem cell lineWhat are induced pluripotent stem cells?
https://vimeo.com/77546203
In 2007, researchers successfully transformed
adult
stem cells
into
pluripotent stem cells; the cells were genetically reprogrammed to act like embryonic stem cells
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Slide13Any other sources of stem cells?
Umbilical cord blood may be used to treat genetic blood diseases and cancersDoes not need a genetic match between donor and recipientMay be stored in a stem cell bank for future useCurrently, no national cord blood stem cell registry or bankAmniotic fluid also contains embryonic stem cellsPotential for use, but still in research stage300/330 - appleby
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Slide14What ethical concerns arise?
Sources of embryonic stem cellsFertilized ova have begun cell divisionFertilized ova have the potential to become embryos → fetuses → live-born infantsWhat is the moral status of a fertilized egg, pre-embryo or embryo? What is the moral status of a fetus? Or of the tissue from an aborted or miscarried fetus?Is embryonic stem cell research tainted by ethical concerns surrounding IVF – such as the use or disposal of surplus embryos?
Is embryonic stem cell research tainted by the abortion controversy?
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Slide15Is there another way?
On May 16, 2013, scientists announced that they had, for the first time, produced embryos using skin cells, and then used the embryos to make stem cell lines. http://www.cnn.com/2014/01/29/health/stem-cell-discovery/ 300/330 - appleby
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Slide16APR. 30, 2013
Surgeons at Children's Hospital of Illinois build and implant a windpipe, using plastic fibers and human stem cells, into 2-year-old Hannah Warren; groundbreaking surgery makes Warren, who was born without a trachea, the youngest person ever to receive a bioengineered organ.http://www.nytimes.com/2013/04/30/science/groundbreaking-surgery-for-girl-born-without-windpipe.html?_r=0 300/330 - appleby
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