generic speaker image
Martha  Paynter  - Womens Wellness Within. Halifax, NS, CA

Martha Paynter Martha  Paynter

Spokesperson, President of the Board | Womens Wellness Within

Halifax, NS, CANADA

Feminist health advocate, leader and collaborator in health services management, policy and research

Media

Publications:

Documents:

Photos:

loading image loading image

Videos:

Audio:

Social

Biography

I am a student nurse in the accelerated program at the Dalhousie University School of Nursing. I hold a Master’s in Health Research Methodology from McMaster University, a Master’s in Development Economics from Dalhousie University, and a Diploma from the Ontario Training Centre in Health Services and Policy Research. My research interests include perinatal health of criminalized women in Atlantic Canada, access to reproductive health services, and human milk donation. Prior to nursing school, I worked for eight years in health services management for the Departments of Health in NB and NS. I am a research coordinator at the Salhousie School of Nursing. I chair the Halifax branch of LEAF, the Women’s Legal Education Action Fund. Through LEAF and in partnership with the Chebucto Family Centre in Spryfield, NS, the Elizabeth Fry Societies in NS, and the IWK Health Centre Community Midwives, I coordinate an interprofessional program to provide perinatal and parenting support to women in correctional facilities in NS, called Women’s Wellness Within. Since 2009, I have served as a volunteer doula for low-income and newcomer mothers in Halifax. In 2012, I started a weekly postpartum and breastfeeding support initiative in the North End of Halifax that continues to flourish. I have two fierce and funny daughters. I am becoming a nurse to develop my clinical capacity and professional foundation to serve women’s health care needs through research, advocacy, and practice.

Industry Expertise (4)

Women Research Public Policy Health and Wellness

Areas of Expertise (7)

Health Services Management Feminist Health Advocacy Childbirth Breastfeeding Pain Management Medication Infant Feeding

Education (4)

Dalhousie University: B.Sc., Nursing- in process

Accelerated Program
Canadian Nursing Foundation Scholar
Betty Spencer Scholarship, Dalhousie

McMaster University: M.Sc., Health Research Methodology 2007

Fellowships:
Centre for Health Economics and Policy Analysis (CHEPA) http://www.chepa.org/
Canadian Health Services Research Foundation (CHSRF)
Canadian Institutes of Health Research (CIHR)

Dalhousie University: M.D.E., Development Economics 2004

Thesis: "Direct-to-Consumer Advertising: Challenging Health Protection in Canada"

McGill University: B.A., Art History & Economics 2001

Accelerated program
Graduated with Great Distinction

Affiliations (5)

  • Halifax Women's Legal Education Action Fund : Chair
  • IWK Hospital/Chebucto Family Centre : Volunteer Doula
  • Milk Bank Working Group : Member
  • Dalhousie University Nursing Society : VP Community Affairs
  • Women's Wellness Within: Board

Languages (2)

  • French
  • English

Media Appearances (11)

'We don't want women to be alone': Halifax group creates guide for females released from prison

Halifax Metro  online

2016-05-12

Doucette’s situation is one many women often find themselves going through upon finishing their jail sentence in Nova Scotia, according to Martha Paynter, the coordinator of Women’s Wellness Within.

Part of the Women’s Legal Education and Action Fund, Women’s Wellness Within provides care for incarcerated women and expectant mothers.

It is behind the creation of a new community resource guide for women released from jail in Halifax, designed to help them start their lives after post-custody.

Paynter said the guide was created after listening to the women held in the Central Nova Scotia Correctional Facility, a jail in Burnside, who wanted a better understanding of the resources available to them once they are released.

“The guide looks at everything from housing to healthcare to employment,” Paynter said Thursday. “The things that you need when you're released and you're alone.”...

view more

Pregnant inmates cut off from volunteer doulas, says women’s support group

CBC News  

2016-11-15

Inmates at the Nova Institution for Women in Truro, N.S., have been denied access to free doula support since May, according to a group that previously provided the service.

Women's Wellness Within is a collaboration of women's support groups that offers free pre-natal and post-partum care workshops and provides volunteer doulas to assist inmates during pregnancy, birth, and after the baby is born. The group also provides care for women at the provincial jail in Burnside.

It includes about 25 women from several groups including the IWK Midwives, the Chebucto Family Centre/IWK Volunteer Doula Program, the Elizabeth Fry Societies of Cape Breton and Mainland N.S., and the Halifax Branch of the Women's Legal Education and Action Fund.

Free service denied

It began working with women at the federal Nova Institution for Women in the fall of 2015, and provided free services for three pregnant women through the winter. The group offers doulas who provide parenting and breastfeeding information and are present during labour and delivery.

But, in May, the group requested a formal written agreement be signed with the institution, to allow volunteers to offer free services, at no cost to the institution.

Martha Paynter
Martha Paynter is coordinator for Women's Wellness Within, the group that had provided free support for pregnant inmates

According to coordinator Martha Paynter, federal correction officials never responded.

"We haven't had responses to our many pleas," said Paynter.

4 women denied service

"It's just been enough," she said. "We know through the grapevine of about four women that have been denied service because of this bureaucracy, or red tape, or whatever you want to call this. And that's too many."

Correctional Service Canada was unavailable for comment.

Joanne Doucette, a Prince Edward Island woman who gave birth to her daughter while serving time at the Nova Institution for Women in 2014, said doulas should be allowed.

The program had not yet started when Doucette was in prison, but she said a doula would have been helpful.

"There's always questions: 'is this right, is that normal, how am I going to do this?'" said Doucette. "You're in jail, you're by yourself, you just need to know that there's someone that will support you, for no other reason, just to support you."

Paynter said pregnancy can be a scary experience for a woman in prison.

"Women in prison have largely been victims themselves of extreme poverty, violence, add

view more

Pregnancies don’t wait. Doula support withheld from pregnant inmates at Nova Institution

NS Advocate  

2016-11-15

KJIPUKTUK (Halifax) – Women incarcerated in the Nova Institution for Women in Truro have not had access to volunteer doula services since June of this year. As a result women and their babies are at risk, says the coordinator of the partnership that used to provide the doula services.


vol6_no1_1

Doula services include emotional, physical and information support to pregnant women before, during and after the birth of their children. Doulas are trained, experienced, and compassionate. They support women’s decisions and advocate for access to services.

Women’s Wellness Within (WWW), the partnership that offered the services has not been told by prison management why referrals have stopped.

Martha Paynter, a coordinator at WWW, is at a loss to understand why.

“In the spring of 2016, after having provided doula services for that year, we asked to put in place an agreement for future services. We had been doing it in an informal way, and we needed an agreement for accountability, transparency, so we could apply for grants, all kinds of reasons,” says Paynter.

The group never received a clear response.

“At the prison at the time there was some turnover, there was an interim warden, then a new warden, we were told that people were on vacation, on sick leave, that roles had changed, and on and on and on it went, ” Paynter says.

Meanwhile the women don’t have access to doula services.

“We helped our last client in April, maybe May,” says Paynter. “But we do know through the grapevine that there are pregnant women in the Nova Institution at this time.”

Repercussions of doing without the help provided by WWW volunteers can be extremely detrimental, says Paynter.

“At Nova you can apply for the mother-child program and have your baby live with you in prison,” says Paynter.

“But these women need our support to be parenting effectively in prison. It’s an extremely stressful environment. They’re cut off from family and friends, they come from anywhere in Atlantic Canada, they’re from New Brunswick, PEI, Yarmouth, Sydney…”

“Our support has helped several women to keep their babies. We help mothers deal with things like an inability to breastfeed successfully, premature breastfeeding cessation, post-partum mental health issues, difficulty with mother-child attachment, etc. The need for support is very real. You have to be able to keep your family together,” says Paynter.

WWW is a partnership among IWK Midwives, the Chebucto Family Centre / IWK Volunteer Doul

view more

Doulas locked out of Nova Institution for women

The Coast  

2016-11-14

Female inmates at the Nova Institution for Women in Truro no longer have access to doula services, and the doulas don’t know why.

“We’re available, but since the new warden took over in June we haven’t been allowed to meet with anyone,” says Martha Paynter, a coordinator with the volunteer group Women’s Wellness Within (WWW) who were offering pregnancy and postpartum support services to several inmates at the corrections facility since last October.


According to Paynter, there have been four women at the prison who were pregnant or had babies since June who haven’t been offered any doula support.

“We’ve been feeling terrified for these women and their babies,” she says. “These women, almost always, the majority have severe mental health issues...the majority have histories of sexual and physical abuse...to go through birth and breastfeeding without support is very traumatizing.”

Women’s Wellness Within is a partnership between IWK midwives and volunteer doulas, the Elizabeth Fry Societies of Cape Breton and mainland Nova Scotia, the Chebucto Family Centre and the Halifax branch of the Women’s Legal Education and Action Fund. The group has provided volunteer doula services for female inmates over the last year at Nova, and since 2014 at the Central Nova Correctional Facility in Burnside.

Those services include everything from pre-natal education (such as the basics of breastfeeding and how to hold a baby), to support during labour and postpartum follow-ups. According to a press release WWW sent out on Monday, the program was provided at no cost to Correctional Service Canada. The organization says that so far, no reason has been given as to why inmates are being denied access to volunteer health workers.

“No justification was given. Services were cut without notice,” reads the release. “Nova is denying these women the support of trained, cleared volunteers.”

Paynter says phone calls and emails to the new warden have gone unreturned. She isn’t sure why WWW is being stonewalled, but speculates it’s because the group has asked to formalize its relationship with the Nova Institution via written agreement. Having something down on paper—like WWW has with the prison in Burnside—is an important step in applying for grants to keep the doula program operational, says Paynter.

“Just to apply for funding we need to have a written agreement that this exists.”

Correctional Service Canada spokesperson Shelley Lawrence wasn’t able to get back to The Coast before

view more

Doula service resumes at women’s prison

The Coast  

2016-11-16

Inmates at the women’s prison in Truro once again have access to doulas after inexplicably being denied the volunteer support service for the past several months.

“Thanks to extensive media coverage, Women's Wellness Within [WWW] has been contacted by management at Nova Institution for Women and we hope to resume working with women who require our services immediately,” reads a press release sent out late Wednesday.

A different release, sent out earlier this week by WWW, said volunteer doulas haven’t been inside the Nova Institution since May.

Correctional Service Canada spokesperson Shelley Lawrence disputes those claims. In an emailed statement, Lawrence writes that the doula services were not cancelled or discontinued at Nova.

“If an inmate requests to meet with a doula, Nova staff will make the necessary arrangements,” Lawrence writes. “Nova Institution is very supportive of having this voluntary service available to the women.”

Martha Paynter, with WWW, says that’s at odds with the experiences of her volunteers. She says last year every pregnant inmate was referred to the doula service, with one prisoner being seen every day for two months. The Elizabeth Fry Society, she adds, even learned of one inmate whose due date was this week and “had never been informed about the doula program.”

“I guess one of the questions is have these pregnant women been informed of the doula services?” says Paynter on Tuesday. “Silence is a response, in and of itself.”

Of course, that was then and this is now Follow-up questions sent on Tuesday to CSC regarding the discrepancies between Paynter’s and Correctional Service’s accounts about what’s been happening the last several months were not answered by Lawrence before publication.

“I am still waiting for some information,” the spokesperson writes Wednesday evening over email. “I will let you know as soon as I have a response.”

Women's Wellness Within is composed of midwives and volunteer doulas from the IWK and partners with the Elizabeth Fry Society (amongst other organizations) to provide pre- and post-natal support for female inmates at the Nova Institution and the Central Nova Correctional Facility in Burnside.

view more

Nova Institution for Women reinstates volunteer doula program

CBC News  

2016-11-16

The volunteer doula program at the Nova Institution for Women in Truro, N.S., has been reinstated, according to the group that runs it.

"I'm so relieved," said Martha Paynter, coordinator of Women's Wellness Within.

"The women were there and the women were asking for this program — and the women were not being allowed to see us."

The group includes women from legal, medical and counselling backgrounds who co-ordinate care for pregnant inmates at both the Burnside provincial jail and the Nova Institution.

Five trained and certified doula volunteers work closely with inmates in a non-clinical capacity to help deliver babies while women are serving time. They also provide breast-feeding support after the birth.

The group began offering free service to women at Nova last autumn, and was able to help three women through their pregancies.

But program co-ordinator Martha Paynter said the service was discontinued in June when the group asked to formalize their agreement with the prison in writing. That, Paynter said, coincided with the arrival of a new warden at the prison.

"I realize that what happened is this fell to the bottom of the priority list," Paynter said. Corrections says program never cancelled

Paynter said she had no response from the prison until after a CBC News article was published.

"I think the news coverage prompted people to write to different people in leadership roles, including the minister of public safety, so I think that made a difference," Paynter said.

Paynter said the group has now been contacted by the warden and given authority to resume providing their services to inmates immediately.

The group also has set a meeting with the warden to formalize an agreement.

In a email statement to CBC News, a spokesperson for Correctional Service of Canada said the program was never been cancelled or discontinued.

Paynter disputes that, and said she understood that several women at the prison who were pregnant had gone without access to a doula. Women's Wellness Within, she said, had not worked with anyone since May.

Correctional Service Canada said there is currently more than one women who is pregnant at the prison, and it provides pregnant inmates with services from the IWK Health Centre, Elizabeth Fry Society, and Maggie's Place, a resource for new mothers after they give birth.

view more

Fliss Cramman’s shackles removed

The Coast  

2016-09-30

The mood was somber and supportive, but the tone indignant, as poet El Jones led a rally for the rights of Fliss Cramman, who was shackled to her hospital bed while recovering from surgery.


Jones posted a call to arms on Facebook earlier this week in order to rally people to the Dartmouth General hospital on Thursday evening. A group of about 30 people came together in support of Cramman, a permanent resident of Canada who came over from England when she was eight years old and now faces deportation.

“We have a voice, and when we use the media and we use our voices, we can achieve justice,” said Jones, about Crammon’s shackles finally being removed on order of Justice minister Diana Whalen.


The public outpouring of support did its job but more still needs to be done, said Jones.

“It’s not just one woman’s case, obviously the shackling was horrific, but there are so many other injustices that are happening,” she said.

Supporters at the rally wanted the public to know that Cramman was a victim of systemic injustice that plagues women all over Canada.


“She had a conviction. She served her time fully. She is one of us,” said Martha Paynter, chair of the Women's Legal Education and Action Fund in Halifax.


Jones, Paynter, and those gathered at the rally stressed that even though Cramman has been unshackled, there remains a need to come together about how people in detention are being treated.



Jones calls it “disturbing” that someone simply detained by police can be shackled. She wants the laws changed to avoid any future recovering hospital patients being handcuffed to their beds.

“We need changes to the law so that no child, ever, comes to Canada and is at risk of being deported. When you come to Canada you are our child now. We take care of you,” said Paynter.

The deportation of Cramman could still be on the table for the Immigration and Refugee Board. Cramman is still too sick to leave the care of her physicians, who have said that she needs at least 18 months of recovery time.

view more

Halifax breast milk shipped to Calgary and sent back to IWK Health Centre

CBC News  

2015-05-28

To say it's a long milk run would be an understatement.

Donated human breast milk is being shipped from Halifax to the Calgary Mothers' Milk Bank where it's pasteurized, tested and processed for safety.

Some of that milk comes back to the IWK Health Centre in Halifax — a 7,500-kilometre round trip.

Martha Paynter is one of four Nova Scotia mothers who volunteers to pump, bag, freeze and send her breast milk to Alberta. She also went through screening and blood testing and was approved by a nurse practitioner in order to donate.

"Most people's reaction is 'Wow, you have a lot of milk.' Yes, I have no issue with supply. An extra bag a day takes me about 10 minutes,'" she said.

She's been saving her excess breast milk since giving birth to her second daughter, Aggie, in December.

"I'm very happy to help. It's really quite easy and it makes a huge difference. It's wonderful," said Paynter.

'Milk that comes in is gone the next week'

Demand for donations, such as Paynter's, is at an all-time high, according to Jannette Festival, the executive director of the Calgary Mothers' Milk Bank. It's the only facility in the country that ships pasteurized human milk.

"Any milk that comes in is gone the next week. So whatever mums can supply we will definitely use and ship back to Nova Scotia," said Festival.

In true Nova Scotia fashion, Paynter ships her frozen milk, surrounded by gel packs and foam, in new lobster boxes. The boxes are sent by courier to Calgary. The non-profit facility covers her expenses.

She's one of approximately 40 monthly donors and yet Calgary's bank only has enough pasteurized milk to cover three to five days. Last summer the facility had inventory lasting two months.

Hospitals making the switch

Demand is up 50 per cent a year since the facility opened three years ago, Festival says, because more hospitals are making the switch to pasteurized milk.

"The hospitals realize the premature babies that they're taking care of and trying to get healthier do fare much better on donor milk than they do formula. They're at lesser risk for diseases."

Given the demand, Festival says the milk is triaged to go to the sickest babies first.

Breast milk
Donor milk stored at the IWK Milk Room has a barcode and an identifying cap to help ensure the dosage goes to the right baby. (CBC)

"We try not to look at the borders unless we are forced to but if there is a sick baby in Halifax or if there is a very sick baby in Calgary we do try to get the milk

Media Appearance Image

view more

How to donate breast milk to the Calgary Mother's Milk Bank

You Tube  

2015-05-26

Instructional video

view more

Sharing the milk of human kindness

CBC News  

2012-06-05

A group of women who share breast milk are hoping to see a more official arrangement at the children's hospital in Halifax.

Erin Burgess relies on other women to supply milk for her two children, Rowan and Wyatt. The twins were born two months premature to a surrogate.

"It is a constant search and asking and looking and asking and putting out requests," said Burgess.

Thankfully, she's found some new mothers willing to share their breast milk.

Martha Paynter produces enough milk to feed her daughter Freyja and the twins. Her extra milk is stored in bags, frozen and then donated.

"I'm able to nourish even more babies. That's really neat," Paynter said.

Sharing comes with safety concerns, however.

When Burgess looks for clean milk through a Facebook group called Human Milk 4 Human Babies, she asks the donors health questions. A milk bank would be different, she said.

"You would know exactly there are standards," she said.

The IWK Health Centre had such a milk bank, but it was shut down along with every other one in the country after the tainted blood scare in the 1980s.

Recently, there have been attempts to revisit that. Vancouver had a milk bank for a few years. Calgary opened one about a month ago.

Kathryn Hayward, a nursing professor at Dalhousie University, is chair of the milk bank working group. She envisions something like a blood bank for milk.

"When it comes down to sharing you are looking at the risks associated with the donor's lifestyle. So if we had a human milk bank we would screen for those risks. Our donor milk would go through Holder pasteurization, which is a flash pasteurization that is actually quite safe," she said.

Paynter said she's confident her donations to Rowan and Wyatt are safe.

view more

When Halifax moms need human milk, they turn to Facebook

The Signal  

2017-01-19

When Denika Savoie’s daughter needed more breast milk than her mother could produce, Savoie knew she wouldn’t be able to count on her health care system to help her.
“We were told by the IWK Health Centre in Halifax that when a preemie baby reaches what would be 34 weeks gestation that donor milk is no longer provided,” she says in a email.

For the first month, Savoie could feed her daughter with her own milk and the help of donor milk given by the IWK.

But later, when her daughter was two months old, Savoie couldn’t supply an adequate amount of human milk to feed her. She knew from her prior interaction that the IWK would no longer be able to give her any. Looking for an alternative, a family friend suggested she ask a donor to send milk, by putting out a request to the group Human Milk 4 Human Babies on Facebook.

Human Milk 4 Human Babies is one of many human milk groups that operate mostly through social media. Any mother can join and ask for human milk or give their own human milk to mothers in need.

These groups operate on trust; donors are not screened and the milk is not tested. The donor and recipient often meet for the exchange and get to know each other. However, the donor is not liable if her milk has a disease that is transmitted to the baby.

Savoie says that a huge part of why she participates in her milk exchange group is to forge bonds.

“Within the week, I was heading out to meet an amazing mother who provided us with over 500 ounces of milk, as well I received milk from an old elementary school friend who was so happy to have seen the post and be able to provide milk for my daughter,” she says.

At the moment, Savoie and others in need of human milk are left by themselves to find what they need and assess the risk of using milk donated by a stranger.

Kathryn Hayward has been a long-time advocate for the implementation of a human milk bank in Nova Scotia. A professor at the School of Nursing at Dalhousie University, Hayward is part of the Breastfeeding Community of Practise. It’s a group that has been preaching the importance of having a milk bank is Nova Scotia since 2012.

“Because we haven’t had a milk bank here, a lot of moms, for altruistic reasons, want to donate their milk because they recognize the benefits of the milk to the child,” she says. Hayward says that, even with no milk banks in the region, mothers donate their milk and do it instead through online groups like Human Milk 4 Human Babies.

Even if a child fits the crit

view more

Event Appearances (1)

LEAF Halifax Persons Day Breakfast

LEAF Halifax Persons Day Breakfast  Saint Mary's Boat Club

2016-10-14

Articles (6)

Health-care providers' views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders European Journal of Human Genetics

2012

Newborn screening (NBS) programs aim to identify affected infants before the onset of treatable disorders. Historically, benefits to the family and society were considered secondary to this clinical benefit; yet, recent discourse defending expanded NBS has argued that screening can in part be justified by secondary benefits, such as learning reproductive risk information to support family planning (‘reproductive benefit’). Despite increased attention to these secondary benefits of NBS, stakeholders’ values remain unknown. We report a mixed methods study that included an examination of providers’ views toward the pursuit of reproductive risk information through NBS, using sickle cell disorder carrier status as an example. We surveyed a stratified random sample of 1615 providers in Ontario, and interviewed 42 providers across 7 disciplines. A majority endorsed the identification of reproductive risks as a goal of NBS (74–77%). Providers’ dominant rationale was that knowledge of carrier status is an important and inherent benefit of NBS as it allows people to make reproductive choices, which is consistent with the goals of disease prevention. However, some challenged its appropriateness, questioning its logic, timing and impact on disease prevention. Others were sensitive to intruding on individuals’ choices or children's independent rights. While the dominant view is consistent with discourse defending expanded NBS, it deviates from the traditional screening principles that underpin most public health interventions. Broader discussion of the balance between benefits to screened individuals and those to families and societies, in the context of public health programs, is needed.

view more

Health-care providers’ views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders European Journal of Human Genetics

2011

Newborn screening (NBS) programs aim to identify affected infants before the onset of treatable disorders. Historically, benefits to the family and society were considered secondary to this clinical benefit; yet, recent discourse defending expanded NBS has argued that screening can in part be justified by secondary benefits, such as learning reproductive risk information to support family planning (‘reproductive benefit’). Despite increased attention to these secondary benefits of NBS, stakeholders’ values remain unknown. We report a mixed methods study that included an examination of providers’ views toward the pursuit of reproductive risk information through NBS, using sickle cell disorder carrier status as an example. We surveyed a stratified random sample of 1615 providers in Ontario, and interviewed 42 providers across 7 disciplines. A majority endorsed the identification of reproductive risks as a goal of NBS (74–77%). Providers’ dominant rationale was that knowledge of carrier status is an important and inherent benefit of NBS as it allows people to make reproductive choices, which is consistent with the goals of disease prevention. However, some challenged its appropriateness, questioning its logic, timing and impact on disease prevention. Others were sensitive to intruding on individuals’ choices or children's independent rights. While the dominant view is consistent with discourse defending expanded NBS, it deviates from the traditional screening principles that underpin most public health interventions. Broader discussion of the balance between benefits to screened individuals and those to families and societies, in the context of public health programs, is needed.

view more

Understanding sickle cell carrier status identified through newborn screening: a qualitative study European Journal of Human Genetics

2010

The expansion of newborn screening (NBS) is increasing the generation of incidental results, notably carrier results. Although carrier status is generally understood to be clinically benign, concerns persist that parents may misunderstand its meaning, with deleterious effects on children and their families. Expansion of the NBS panel in Ontario, Canada in 2006 to include sickle cell disorders drew attention to the policy challenge of incidental carrier results. We conducted a study of consumer and provider attitudes to inform policy on disclosure. In this paper, we report the results of (i) qualitative interviews with health-care providers, advocates and parents of carrier infants and (ii) focus groups with new parents and individuals active with the sickle cell community. Lay and provider participants generally believed that carrier results were clinically insignificant. However, some uncertainty persisted among lay consumers in the form of conjecture or doubt. In addition, consumers and advocates who were most informed about the disease articulated insistent yet dissonant claims of clinical significance. Meanwhile, providers referenced research knowledge to offer an equivocal assessment of the possibility and significance of clinically symptomatic carrier status. We conclude that many interpretations of carrier status are in circulation, failing to fit neatly into the categories of ‘clinically significant’ or ‘benign.’ This creates challenges for communicating clearly with parents – challenges exacerbated by inconsistent messages from screening programs regarding the significance of sickle cell carrier status. Disclosure policy related to incidentally generated infant carrier results needs to account for these complex realities.

view more

Consent for Newborn Screening: The Attitudes of Health Care Providers Public Health Genomics

2009

Background: As newborn screening (NBS) expands to meet a broader definition of benefit, the scope of parental consent warrants reconsideration. Methods: We conducted a mixed methods study of health care provider attitudes toward consent for NBS, including a survey (n = 1,615) and semi-structured interviews (n = 36). Results: Consent practices and attitudes varied by provider but the majority supported mandatory screening (63.4%) and only 36.6% supported some form of parental discretion. Few health care providers (18.6%) supported seeking explicit consent for screening condition-by-condition, but a larger minority (39.6%) supported seeking consent for the disclosure of incidentally generated sickle cell carrier results. Qualitative findings illuminate these preferences: respondents who favored consent emphasized its ease while dissenters saw consent as highly complex. Conclusion: Few providers supported explicit consent for NBS. Further, those who supported consent viewed it as a simple process. Arguably, these attitudes reflect the public health emergency NBS once was, rather than the public health service it has become. The complexity of NBS panels may have to be aligned with providers’ capacity to implement screening appropriately, or providers will need sufficient resources to engage in a more nuanced approach to consent for expanded NBS.

view more

Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening Journal of Medical Ethics

2009

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results.

view more

Where to Go for Help in HRM: A Resource Guide for Women. Halifax LEAF

2016-05-12

Where to do for help in HRM

view more

Contact