How I Changed from Science to Technology

by Azahara Fernández Guizán

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How I changed from Science to Technology

I was never a kid that was sure about what professional career I wanted when I grew up. And this has been a good thing for me, because it has let me experience many different fields, and led me to where I am today.

I was born in the north of Spain, in a mining zone of Asturias. My father was a coal miner and my mother a housewife. I attended a local school and a local high school. My grandmother says I was an unusual kid, preferring to be bought a book rather than a box of sweets. I also started learning English when I was 6 years old, and spent my free time reading historical novels and biographies.

I enjoyed visiting museums and monuments, and I used to search for information in my town’s library before going on an excursion. I loved to write stories and tales, and had always obtained high marks in school, which led my teachers to suggest that I study medicine. But I always changed my mind –  from architecture, to journalism or even dentistry, depending on the book I was reading or the museum I’d just visited.

At that age, only one thing was clear: I wanted to be an independent and strong woman like the ones that inspired me. I hadn’t seen many role models during my primary education, but one teacher told us about Marie Curie. At the library, I discovered Rita Levi-Montalcini and the Brontë sisters.

 

SECONDARY STUDIES

During the last year of high-school I was a mess, and the pressure was high because I had to make a decision. All I had were doubts

In Spain at that time, after finishing your last secondary education course, the students that want to continue to a degree have to take a general exam, the PAU. You could choose the subjects you want to be tested on and, after the exams took place, you were given a mark calculated to take account of your secondary school marks and the results of PAU exams. According to this mark, you could register for certain degrees.

At that point, I decided to take more exams than necessary on the PAU in order to have more options in different types of degree, for example, science, engineering, or languages… But the worst moment of my student life came, and I had to decide.

I had two options on my mind: a Software Engineering degree, and a Biology degree. I must admit it, but at that time I only knew engineering stereotypes and I never liked video games or anything related with hardware, so I decided that a Biology degree would suit me better.

BIOLOGY DEGREE AND NEUROSCIENCE MASTERS

During my degree, I decided that plants and animals were not my passion, but I loved Microbiology, Genetics, Immunology and Neuroscience. I discovered more female role models, researchers who really inspired me, whose lives were incredible to me. I worked hard during my degree and travelled a lot during the summers, thanks to some scholarships that I was awarded (I spent one month in Lowestoft, another in Dublin, and another one in Toronto), and started learning German.

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Azahara in the lab

During the second year of my biology degree, I decided that I would become a scientist, and started to look for a professor who would let me gain some experience in their laboratory.

During my penultimate year, I started working in a Neuroscience laboratory, studying the 3D eye degenerating pattern on C3H/He rd/rd mice. After finishing my degree, I decided to enrol in a Masters of Neuroscience and Behavioural Biology in Seville. During this masters, I worked in another Neuroscience laboratory doing electrophysiological studies, trying to understand how information is transformed in the cerebellar hippocampus circuit and how this mechanism could allow us to learn and memorise.

This was a period of my life where I worked a lot of hours, the experiments were very intense, and I had the opportunity to meet important scientist from all the world. I also had a physics peer that analysed all our data, and developed specific programmes in Matlab, which impressed me profoundly.

IMMUNOLOGY PHD

After this period, I continued working in Science, but I decided to start my PhD on Immunology, back in Asturias.

I worked in a laboratory in which, due to my friends in the lab, every day was special. We worked hard studying different types of tumours and testing different molecules, but also had the time to share confidences and laughs. After three years, I became a PhD in Immunology, and as it was the normal thing to do, I started looking for a post-doc position.

Rather than feeling happy or enthusiastic about the future, I discovered myself being upset and demotivated. I really didn’t want to carry on being a scientist. A huge sensation of failure invaded me, but as J.K. Rowling said “It is impossible to live without failing at something, unless you live so cautiously that you might as well not lived at all. In which case, you’ve failed by default”.

I want to specify that I don’t consider my PhD a waste of time – it has given me, apart from scientific publications, many important aptitudes and abilities, such as team work, analysis, problem solving, leadership, organisation skills, effective work habits, and better written and oral communication.

BECOMING A SOFTWARE DEVELOPER

As you might imagine, this was a hard moment of my life. I was unemployed, and doubtful about my professional career – just as I had been after high school.

Thanks to my husband, who supported me while converting my career, I decided to give software development a try.  As I didn’t have the necessary money or time to start a new degree, I signed up for a professional course in applications software development. The first days were difficult since all the other students were young and I didn’t feel at ease.

But as I learned software languages as HTML, CSS, JavaScript and Java, I also participated with good results in some software competitions which allowed me to gain confidence.

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In 2015 I started working as software developer in .Net MVC, a language that I hadn’t studied during my course, but I had the necessary basics to learn it quickly and become part of a team. For me, one of the most marvellous things about software development is that it consists of team-work.

I also discovered that there are a lot of people working in this field that love to exchange knowledge, and I regularly go to events and meetups. I have also started recently giving talks, and workshops, some of them technological, with the aim of promoting the presence of women in technology.

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Women and girls need to be encouraged to discover what software development really is. The software industry needs them. Software can be better, but only if it is developed by diverse teams with different opinions, backgrounds, and knowledge.

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Eating Disorders in the Workplace

by Jaclyn Siegel, University of Western Ontario.

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Eating disorders are among the most common mental illnesses in women (Hudson, Hirpi, Pope, & Kessler, 2012; Mangweth-Matzek & Hoek, 2017) and have the highest mortality rate of any psychiatric condition (Arcelus, Mitchell, Wales, & Nielsen, 2011). There are three primary eating disorders outlined in the current version of the diagnostic and statistical manual (DSM-5). First, anorexia nervosa is characterised by preoccupation with food, weight, and body shape, as well as caloric restriction. Due to chronic low energy intake, those with anorexia can sometimes have noticeably thin bodies, but this is not always the case. Second, bulimia nervosa, on the other hand, is also associated with the same cognitive obsessions but is hallmarked by binge eating and purging. Purging includes any behaviours performed as compensatory mechanisms for perceived over-consumption, such as vomiting, laxative abuse, or exercise. Bingeing refers to feeling out of control while eating large quantities of food, usually in a short amount of time. Third, binge eating disorder is a condition comprised of binge eating, but not compensatory behaviors. Those with binge eating disorder, however, often experience extremely high levels of shame and guilt and can sometimes, but not always, have a higher weight status as the result of increased caloric intake (American Psychiatric Association, 2013).

Women with eating disorders endure cognitive, physical, and psychosocial impairment as a result of the conditions (Bohn, 2008; Mehler, Birmingham, Crow, & Jahraus, 2010; Polivy, 1996). For many, these symptoms begin during adolescence, and some receive treatment during the teen and early adult years (Favaro, Caregaro, Tenconi, Bosello, & Santonastaso, 2009). However, eating disorders are notoriously difficult to treat. Even the most effective and efficacious interventions have high relapse rates, and the number of women who achieve a state of permanent recovery is very low. As such, some researchers consider eating disorders to be chronic conditions whereby afflicted individuals vacillate between periods of symptom relapse and remission throughout their lives (Fairburn, Cooper & Cooper, 1986; Herzog et al., 1999; Russell, Szumkler, Dare, & Eisler, 1991). Additionally, the financial burden of both initial psychological intervention, as well as prolonged maintenance and monitoring, can serve as a barrier to full recovery for women with these conditions (Samnaliev, Noh, Sonneville, & Austin, 2014). However, while women with eating disorders are severely impacted by their conditions, they often are still able to engage in social relationships, schooling, and, notably, work.

In the United States, individuals with diagnosed eating disorders are protected from workplace discrimination and are entitled to reasonable accommodations through the Americans with Disabilities Act (Americans with Disabilities Act, 1990). Research suggests that employment can have myriad benefits for individuals with disabilities, (Fleming, Fairweather, & Leahy, 2013; Rubin, Chan, & Thomas, 2003), but the nature of workplace life may complicate the relation between work and well-being for women with eating disorders. Specifically, stress and stigma are frequently experienced and difficult to avoid at work, and both the experience of stress and perceiving stigma have been shown to exacerbate eating disorder symptomology and even predict relapse (Griffiths, Mond, Murray & Touyz, 2015; Grilo et al., 2012). Given that a large portion of adult life is spent at work (Waldo, 1999) and the relatively high prevalence of eating disorders in adult women, the intersection of working life and symptom management is of great importance. However, there is extremely little work done that examines the repercussions of managing an eating disorder (or any other clinical mental health condition, for that matter) in the workplace.

‘…there is extremely little work done that examines the repercussions of managing an eating disorder (or any other clinical mental health condition, for that matter) in the workplace.’

In order to examine this critical gap, it was necessary to let women tell their own stories of the ways in which their eating disorders had interacted and interfered with workplace life. I interviewed seventy women who had been diagnosed with either anorexia, bulimia, or binge eating disorder and had managed their conditions at work. Participants were encouraged to share as much as they felt comfortable and were free to discuss stories from different jobs and various periods in their recovery journeys. My co-author, Katina Sawyer, and I developed a theoretical model of the way in which individual characteristics of our participants uniquely predicted different stigma, stress, and identity management strategies for the complex navigations and negotiations of workplace life. We additionally identified the specific organisational and interpersonal stressors faced by women at work, which served a moderating role in women’s selection of specific management strategies. We then examined the organisational and personal outcomes of engaging in these various techniques. This work was presented at both the annual conference for the Society of Industrial and Organizational Psychologists in Orlando, FL in April of 2017 as well as the International Conference on Eating Disorders in April of 2018. This work is still being finalised, but, broadly, these were the findings:

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Certain demographic characteristics of the women in our sample appeared to predict the types of management strategies in which they engaged at work. Specifically, disease type, recovery progress, perceived visibility of the disease, and attitudes toward stigma all had a unique influence on the ways women engaged in the workplace. However, regardless of individual characteristics, workplace stressors were largely the same for all of the women in our sample.

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Some were labeled as organisational stressors, or global aspects of work life that contributed to the stress and stigma experienced by participants. Notably, food-centric work events such as the lunch hour, office parties in which food was present, happy hours and events outside of work, and business meetings over meals presented unique challenges for women with eating disorders.

Additionally, health-focused workplaces that featured wellness competitions that prioritised weight loss or dieting, or had health propaganda in the office such as scales and posters, also proved problematic. Scheduling conflicts were also challenging for these women, and some specific occupations appeared to be more stressful for participants than others. Interpersonal stressors included coworker insensitivity, specifically diet talk and general trivialization of mental health at work, as well as leader intolerance with the condition.

Individual characteristics seemed to be influenced by these workplace stressors, and the combination of these two factors affected how women with eating disorders managed stigma, stress, and their identities in the workplace. Participants in our study often felt torn with regard to whether or not, when, how, and with whom to disclose aspects of their condition at work. As such, they disclosed differentially, often only doing so when their once-invisible identity took on visible characteristics. Additionally, many chose to avoid workplace stressors (organisational and interpersonal) entirely or engage in mindfulness strategies to manage them. Many chose to engage in recovery-centric behaviours, but others chose to prioritise professionalism over recovery. These strategies appeared to be differentially selected depending on individual characteristics.

Techniques varied in effectiveness for these women and resulted in differential organisational and personal outcomes. The affected organisational outcomes included work performance, job attitudes, and organisational commitment. Impacted personal outcomes included eating disorder symptoms, social connectedness, and emotional distress. Specifically, women who were able to effectively balance the stress of work as well as their recoveries felt incentivised to maintain their recovery efforts for the sake of enjoying the benefits of their careers, as well as the authentic social relationships they were able to establish at work.

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Conversely, those who felt overwhelmed by the stressors of work life sometimes returned to disordered eating symptoms as coping mechanisms. These personal outcomes seemed to predict a prolonged course of the condition and sometimes even relapse for these women. For some, the general work environment of diet culture, deadlines, and emotional sterility was too triggering, and a few of the participants in the study revealed that they had left the workforce entirely for the sake of their health. Others, however, found ways to navigate work life that were conducive to both occupational success and recovery.

Overall, our research suggests that women with eating disorders are willing and able to make important contributions to and flourish within the workforce, but only when stress and stigma are well-managed. In order to make employment more enjoyable and healthy for women with eating disorders, workplaces must be conscious of the ways in which the culture of the organisation is may hinder proper eating disorder maintenance and recovery, specifically by reconsidering organisational health incentives and monitoring the way that diet culture, weight stigma, and mental health trivialisation are perpetuated in the workplace. Women recovering from eating disorders are engaged in a prolonged healing process and must feel safe, comfortable, and supported in order to properly manage the symptoms of their conditions. Leaders can help women with eating disorders by being tolerant of lingering symptomology and generously granting accommodations to women with these diagnoses. Offices in general can work with individuals with eating disorders to ensure that food-centric work events are comfortable and enjoyable for them, perhaps by ensuring that there is at least one “safe food” for them at the event. Coworkers can best support women in the office with eating disorders by monitoring and minimising their language surrounding food, bodies, and eating and by making the person with the condition feel welcome by inviting her to social events, even if she rejects these invitations initially.

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Women with eating disorders should consider working with therapists  to specifically learn how to successfully navigate workplace stressors. Though our work identified disclosure, recovery-centric behaviours, and mindfulness as particularly effective stress, stigma, and identity management strategies, we understand that what works for some may not work for others, depending on their level of comfort. Additionally, we encourage women with eating disorders to familiarise themselves with their rights as per the Americans with Disabilities Act. A list of reasonable accommodations can be found at: https://askjan.org/media/downloads/EatingDisACSeries.pdf. We are hopeful that this study will lay the framework for future research on managing mental health conditions in the workplace and help organisations, clinicians, and women with eating disorders find effective ways to flourish in both their recoveries and their careers.

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders: DSM-5. Washington, D.C.: American Psychiatric Association.

Americans with Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328 (1990)

Arcelus, J., Mitchell, A. J., Wales, J., & Nielsen, S. (2011). Mortality rates in patients with anorexia nervosa and other eating disorders. A meta-analysis of 36 studies. Archives of General Psychiatry, 68, 724-731. doi:10.1001/archgenpsychiatry.2011.74

Bohn, K., Doll, H. A., Cooper, Z., O’Connor, M., Palmer, R. L., & Fairburn, C. G. (2008). The measurement of impairment due to eating disorder pathology. Behaviour Research and Therapy, 46, 1105-1100. doi:10.1016/j.brat.2008.06.012.

Fairburn, C., Cooper, Z., & Cooper, P. (1986). The clinical features and maintenance of bulimia nervosa. The British Journal of Psychiatry, 144, 238-246. doi:10.1002/oby.20301

Fleming, A. R., Fairweather, J. S., & Leahy, M. J. (2013). Quality of life as a potential rehabilitation service outcome. Rehabilitation Counseling Bulletin, 57, 9-22. doi:10.1177/0034355213485992

Favaro, A., Caregaro, L., Tenconi, E., Bosello, R., & Santonastaso, P. (2009). Time trends in age at onset of anorexia nervosa and bulimia nervosa. Journal of Clinical Psychiatry, 70, 1715-1721. doi:10.4088/JCP.09m05176blu

Griffiths, S. B., Mond, J. M., Murray, S. B., & Touyz, S. (2015). The prevalence and adverse associations of stigmatization in people with eating disorders. International Journal of Eating Disorders, 48, 767-774. doi:10.1002/eat.22353

Grilo, C., Pagano, M., Robert, S., Markowitz, J., Ansell, E… Skodol, A. (2012). Stressful life events predict eating disorder relapse following remission: Six-year prospective outcomes. International Journal of Eating Disorders, 45, 185-192.

Herzog, D., Dorer, J., Keel, P., Selwyn, S., Ekeblad, E., Flores, A., … Keller, M. (1999). Recovery and relapse in anorexia and bulimia nervosa: A 7.5-year follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 829-837. doi:10.1080/21662630.2016.1202125

Hudson, J., Hirpi, E., Pope, H., & Kessler, R. (2012). The prevalence and correlates of eating disorders in the National Comorbidity Survey Replication. Biological Psychiatry, 72, 164. doi:10.1016/j.biopsych.2006.03.040

Mangweth-Matzek, B. & Hoek, H. W. (2017). Epidemiology and treatment of eating disorders in men and women of middle and older age. Current Opinions in Psychiatry, 30, 446-451. doi:10.1097/YCO.0000000000000356

Mehler, P. S., Birmingham, L. C., Crow, S. J., & Jahraus, J. P. (2010). Medical complications of eating disorders. In C. M. Grilo & J. E. Mitchell (Eds.), The treatment of eating disorders: A clinical handbook (pp. 66-80). New York, NY, US: Guilford Press.

Polivy, J. (1996). Psychological consequences of food restriction. Journal of the American Dietetic Association, 96, 589-592. doi:10.1016/S0002-8223(96)00161-7.

Russell, G., Szmukler, G., Dare, C., & Eisler, I. (1991). An evaluation of family therapy in anorexia nervosa and bulimia nervosa. Archives of General Psychiatry, 44, 1047-1056. doi:10.1001/archpsyc.1987.01800240021004

Samnaliev, M., Noh, H. L., Sonneville, K. R., & Austin, S. B. (2015). The economic burden of eating disorders and related mental health comorbidities: An exploratory analysis using the U.S. Medical Expenditures Panel Survey. Preventative Medicine Reports, 2, 32-34.

Waldo, C. R. (1999). Working in a majority context: A structural model of heterosexism as minority stress in the workplace. Journal of Counseling Psychology, 46, 218-232. doi:10.1037/0022-0167.46.2.218

 

Social Egg Freezing, the Law and Women’s Autonomy: Are We Putting All Our Eggs into One Frozen Basket?

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Image from someecards.

by Virginia Novaes Procópio de Araujo, Dublin City University

Lisa is 37 years old and she has just broken up with her long-term boyfriend. She always imagined that this relationship would lead to marriage and children. Lisa is stable and happy in her career. However, she is now worried that if she does not meet someone new, and soon, her biological clock will be merciless with her and she will be left childless. After a visit to a fertility clinic she decides to freeze her eggs, in order to remove the pressure of having to rush into a new relationship. She wants time and is not ready to date again. She wants to raise a child with a committed partner and believes that freezing her eggs will offer her the best chance of ensuring this.

The story of Lisa is fictional, but reflects the current experience of many women who are availing of social egg freezing.

SPERM, EMBRYOS, EGGS AND THE BIRTH OF SOCIAL EGG FREEZING

Sperm has been successfully frozen since the 1950s using a technique called slow-freezing, and embryo freezing has been an established technique since 1992.[1] On the other hand, egg freezing has been considered experimental until very recently. This was mainly due to the fact that eggs contain a higher amount of water than embryos.[2] The slow freezing of eggs results in the formation of ice crystals, which damage the cell and result in lower success rates.[3] Therefore, historically, egg freezing was only accessible to women with cancer or genetic diseases which cause premature infertility, as a small chance to conceive in the future was better than none at all.[4]

The experimental status of egg freezing was lifted in 2012 in Europe[5] and 2013 in the USA[6] due to advances in freezing methods, particularly a process known as vitrification, which involves rapid cooling of the eggs in liquid nitrogen without the formation of ice crystals. This is highly effective for egg freezing. Therefore, egg freezing began to be offered to healthy, fertile women and social egg freezing was born. This is the idea that women freeze their eggs due to lifestyle reasons, which include: to prevent age-related infertility, to postpone motherhood due to their career, to find a suitable partner, to be financially stable, to be psychologically and emotionally ready to become a mother, and to expand their reproductive autonomy.[7]

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Eggs cryopreserved in liquid nitrogen. Image from Kinderwunsch & Hormonzentrum Frankfurt 

 

LAW, AUTONOMY AND FEMINIST BIOETHICS

My research looks at social egg freezing in Europe from a legal and feminist bioethical perspective. I am assessing the impact of the law on social egg freezing in Europe, particularly in the United Kingdom and Ireland to determine if the law enhances or diminishes women’s reproductive options. For instance, my research has identified that Austria, France and Malta have specific law prohibiting egg freezing for non-medical reasons,[8] diminishing women’s options in those countries.

In the context of autonomy, traditional liberal Bioethics tends to have an individualistic and self-sufficient approach, disregarding the influence power relations (“competing social forces”) can have on someone’s autonomy.[9] In a liberal society, freedom is given to the individual to do as they please with their body, as long as they do not cause harm to others.[10] This highlights the rights of an individual and removes the focus on the responsibilities that may arise from that choice, for example, a child and its well-being.[11]

However, the literature demonstrates that women take their relationships and the power structures that surround them into account when making decisions.[12] For instance, a woman that decides to freeze her eggs is not only thinking about herself, but also about her parents (the future grandparents), her future partner or husband, the health of her future baby (as younger eggs are preferable to avoid chromosomal abnormalities), her finances, her maturity, her employment situation and even society (to increase birth rates in an ageing population). Considering the numerous competing social forces, a woman may feel empowered or oppressed by social egg freezing, and that is why my research adopts a relational autonomy approach from Feminist Bioethics, particularly the theory of self-trust developed by Carolyn McLeod.

Trust is a relational aspect of life involving two people: a patient trusts their doctor on the grounds of an established moral relationship (doctor-patient). Self-trust lacks the two entities, as when one trusts oneself, they are optimistic they will act in a competent manner and within their moral commitment.[13] It is relational in the sense that it is moulded by the responses of others and societal norms, as the other gives a truthful and respectful feedback about yourself.[14] Therefore, if a doctor does not inform realistically of potential risks and future outcomes of egg freezing, a woman may make poor choices.

Research shows that women of reproductive age are misinformed regarding cost, process and effectiveness of egg freezing, and that they want to be accurately informed about it.[15] Further, studies[16] demonstrate that residents and health professionals in the area of Obstetrics and Gynaecology lack accurate information about fertility decline due to age, they have conservative opinions, and are reticent to inform healthy patients about social egg freezing.[17] Medical paternalism could explain this behaviour and it needs to be remedied urgently.

 

EGG FREEZING – HOW IT WORKS

Women need to be aware that in order to freeze eggs, they are collected in the same way as is done for IVF. Women self-inject hormones for approximately 10-14 days to stimulate ovulation and when the eggs are mature, they are collected surgically under sedation, with small risks of infection and bleeding.[18] Hormone injections are not completely risk-free, and although rare, some women may develop ovarian hyperstimulation syndrome (OHSS)[19], characterised by swollen ovaries, a bloated abdomen, pain, nausea, vomiting and, in severe cases, liver dysfunction and respiratory distress syndrome.[20]

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Egg collection and freezing. Image from Clínica Eugin, Barcelona.

Although IVF using thawed eggs is just as successful as using fresh eggs[21], there are no guarantees that if a woman freezes her eggs, she will definitely have a baby – it just increases her chances.[22] That is simply the reality of fertility treatments, and doctors need to be forthcoming with information. Ideally, women will conceive naturally, having frozen their eggs merely as an ‘insurance policy’ and for peace of mind. [23] The age of the woman impacts the quality of the eggs and doctors recommend that egg freezing occurs prior to the late-thirties.[24] There is considerable emphasis on educating young women on how not to get pregnant. Women also need to be educated about their biological ‘clocks’ and the possibilities and limitations of egg freezing.

CAREER AND THE PURSUIT OF ‘MR. RIGHT’ INSTEAD OF ‘MR. RIGHT NOW’

The reasons why women are freezing their eggs also need to be demystified. Baldwin interviewed women who availed of social egg freezing in the UK, the USA and Norway and discovered that they believe that there is a ‘right time’ to become a mother.[25]  This is when, ideally, they are financially secure and in a stable relationship with a man who wishes to raise a child.[26] There has been considerable backlash from the media about social egg freezing, particularly since 2014, when Apple and Facebook offered egg freezing as a benefit for their female employees.[27] It raised concerns that women would be forced into it in order to be considered a ‘team player’ and ascend in their careers, treating motherhood as an inconvenience. However, the main reason why women are freezing their eggs has nothing to do with career advancement, it is actually due to the lack of a suitable partner and to avoid future regret.[28] In fact, one of the women interviewed by Baldwin stated: “I think the media really misrepresent women who have children later. I don’t know a single woman who has put off having babies because of her career, not a single woman I have ever met has that been true for.”[29]

Further, Baldwin and her team coined the term “panic-partnering” to express what future regret meant for the women in the study.[30] This is the fear that they might run out of time and settle for any man, rush into having a child purely to avoid childlessness, and regret this later once the relationship fails.[31] These women also rejected the idea of using a donated egg or having a baby alone with donated sperm, as they wanted the ‘whole package’ – a committed relationship and a father to their genetically-related child.[32] Social egg freezing allows women to ‘buy time’ to find this right partner.

There is ongoing research at the London Women’s Clinic to assess why women are freezing their eggs.[33] Zeynep Gurtin from the University of Cambridge chairs open seminars for single women at the clinic and has identified similar women to those from Baldwin’s research: they are highly educated, in their late thirties and early forties and are “frustrated by their limited partnering options.”[34] These women want to find ‘Mr. Right’, not ‘Mr. Right Now’. Gurtin affirms: “as women become more and more successful in educational and career terms, they have begun to outnumber similarly qualified men, and will need to adjust their partner expectations, embark on single parenting, embrace childlessness, or put some eggs in a very cold basket.”[35]

I recently attended one of these seminars and found the London Women’s Clinic to be a highly positive environment, with counselling and support groups available for their clients. The open seminars are a good opportunity for women to obtain realistic information in clear terms, without it being a sales pitch. Research from the USA[36] affirms that a considerable number of women regret freezing their eggs, particularly if a low number of eggs are obtained. They also complained about a lack of emotional support and counselling.[37] Therefore, it is crucial that clinics offer counselling both during and after egg freezing to ensure that women have realistic expectations as to what the technology can and cannot do.

 

COSTS

Social egg freezing is not covered by health insurance[38] and is therefore a private procedure, costing between £3000 – £3500 in the UK[39] and approximately €3000 in Ireland.[40] This raises questions of social justice and fairness, as only women with greater financial means can access egg freezing for non-medical reasons. Further research focusing on this issue is necessary.

 

FREEDOM FROM EMBRYO FREEZING AND LEGAL DISPUTES

The success of egg freezing expands women’s reproductive autonomy as it frees them from having to freeze embryos with a partner. In 2007, a British case reached the European Court of Human Rights (ECtHR). In Evans v. United Kingdom, the applicant, Natallie Evans, had ovarian cancer and underwent IVF with her partner to create six embryos to be frozen. When the relationship ended, the ex-partner removed his consent for the embryos to be used. The applicant could no longer extract eggs and the six embryos were her last opportunity to have a genetic child. The ECtHR discussed whether there was a violation of article 2 (right to life) and article 8 (right to respect for privacy and family life). It was decided that since embryos do not have a right to life in the UK that there was no violation of article 2.[41] The Court also found that overruling someone’s withdrawal of consent, even in this exceptional case, would not violate article 8 or exceed the margin of appreciation.[42]

In other words, the ECtHR decided that the ‘right not to procreate’ of the ex-partner overruled the ‘right to procreate’ of the applicant and the embryos had to be discarded. Ms. Evans could have created embryos with a donor sperm, avoiding legal disputes. However, as has been demonstrated, women wish to have a partner to raise a child with. The options for women have expanded and if they freeze their eggs it is their sole decision to use them for IVF with a partner or sperm donor, to donate them to another woman, or for research.

 

GAMETE STORAGE AND A CALL TO ACTION

Current technology allows eggs to be frozen indefinitely. In the UK, the Human Fertilisation and Embryology Act determines that gametes can be stored for up to 10 years for non-medical reasons and up to 55 years for medical reasons.[43] This reduces the benefits of social egg freezing. For instance, if a woman freezes her eggs at age 27 to ensure she has the best possible eggs, she will have to use them prior to her 37th birthday. There is no time extension, which could cause a considerable amount of pressure for this woman, who believed she was buying herself extra time.

Kylie Baldwin, one of the most prominent researchers of social egg freezing in the UK, has created a petition to convince the UK Government and Parliament that the law needs to change.[44] Signatures from UK citizens and residents are requested at this moment, prior to the 27th of October 2018, in order to be reviewed by the UK Government. This movement is highly important, and I advise all UK citizens and residents to sign it.

In Ireland, the General Scheme of the Assisted Human Reproduction Bill 2017 also adopts this 10-year time limit for non-medical gamete freezing.[45] If the bill remains unaltered when passed as a law it will raise the same issues that are currently being debated in the UK. Perhaps, there is still time for an amendment in the Irish bill.

 

CONCLUSION

 Social egg freezing is quite a recent development and further interdisciplinary research is required to examine the legal, sociological, feminist and economic implications of it. This is needed in order to gain a complete picture of the technology and the impact it has on women’s lives, relationships and society as a whole. There is a risk that women are gambling with their fertility by ‘putting all their eggs in one basket’. That is why social egg freezing must be approached with caution and with realistic expectations by women in order to avoid potential disappointment. However, it is an exciting opportunity, and it is quite clear that the rights and freedoms available to women in relation to their reproductive autonomy have expanded significantly in the last century. This is further evidenced by the very recent successful result in Ireland’s referendum to repeal the 8th amendment (a constitutional ban on abortion which was introduced in 1983 and which allowed for abortion only where a woman’s life was at risk).

 

I would like to dedicate this post in memory of Grace McDermott, co-founder of Women Are Boring, who I met at the induction of our PhD programme in 2014 and became friends with. She was a wonderful person and I am happy to have had her in my life. I am sure she would have strong opinions about social egg freezing and we would have had some lively discussions about the current state of it.

[1] Valerie L. Peddie and Siladitya, ´Request for “social egg freezing” in Khaldoun Sharif and Arri Coomarasamy, Assisted Reproduction Techniques: Challenges and management options (Wiley-Blackwell 2012) 160 – 161

[2] Peddie and Bhattacharya supra n1, 161

[3] ibid 161

[4] Eleonora Porcu, Patrizia Maria Ciotti and Stefano Venturoli, Handbook of Human Oocyte Cryopreservation (Cambridge University Press 2013) 26

[5] ESHRE Task Force on Ethics and Law, Wybo Dondorp et al, ‘Oocyte cryopreservation for age-related fertility loss’ (2012) 27 Human Reproduction 1231

[6] The Practice Committees of the American Society for Reproductive Medicine and the Society for Assisted

Reproductive Technology, ´Mature Oocyte Cryopreservation: A Guideline`, (2013) 99 Fertility and Sterility 37

[7] Imogen Goold and Julian Savulescu, ´In favour of freezing eggs for non-medical reasons` (2009) 23 Bioethics 47, 47

[8] The ESHRE Working Group on Oocyte Cryopreservation in Europe, Françoise Shenfield et al, ‘Oocyte and Ovarian Tissue Cryopreservation in European Countries: Statutory Background, Practice, Storage and Use’ (2017) Human Reproduction Open 1, 4

[9] Carolyn McLeod, Self-Trust and Reproductive Autonomy (The MIT Press 2002) 105

[10] Catriona Mackenzie, ‘Conceptions of Autonomy and Conceptions of the Body in Bioethics’ in Jackie Leach Scully, Laurel E. Baldwin-Ragaven and Petya Fitzpatrick (eds), Feminist Bioethics: At the Center, on the Margins (The John Hopkins University Press 2010) 72-73

[11] Mackenzie supra n10, 83

[12] Carol Gilligan, In a Different Voice: Psychological Theory and Women’s Development (Harvard University Press 1993) 71; Susan Sherwin, No Longer Patient: Feminist Ethics and Health Care (Temple University Press 1992) 46

[13] McLeod supra n9 103

[14] ibid 37

[15] J.C. Daniluk and E. Koert, ‘Childless Women’s Beliefs and Knowledge About Oocyte Freezing for Social and Medical Reasons’ (2016) 31 Human Reproduction 2313, 2319

[16] L. Yu et al, ‘Knowledge, Attitudes, and Intentions Toward Fertility Awareness and Oocyte Cryopreservation Among Obstetrics and Gynecology Resident Physicians’ (2016) 31 Human Reproduction 403; Désirée García et al, ‘Poor Knowledge of Age-Related Fertility Decline and Assisted Reproduction Among Healthcare Professionals’ (2017) 34 Reproductive BioMedicine Online 32

[17] Yu et al supra n16, 403; García et al supra n16, 35

[18] ESHRE supra n5, 1233

[19] ibid 1233

[20] Michael M Alper and Bart C Fauser, ‘Ovarian Stimulation Protocols for IVF: is More Better than Less?’ (2017) 34 Reproductive Biomedicine Online 345, 348

[21] Joseph O. Doyle et al, ‘Successful Elective and Medically Indicated Oocyte Vitrification and Warming for Autologous In Vitro Fertilization, with Predicted Birth Probabilities for Fertility Preservation According to Number of Cryopreserved Oocytes and Age at Retrieval’ (2016) 105 Fertility and Sterility 459, 459

[22] Ana Cobo and Juan Antonio García-Velasco, ‘Why All Women Should Freeze their Eggs’ (2016) 28 Current Opinion in Obstetrics and Gynecology 206, 206

[23] Zeynep Gurtin, ‘Why are Women Freezing their Eggs? Because of the Lack of Eligible Men’ (7 July 2017) The Guardian <https://www.theguardian.com/commentisfree/2017/jul/07/egg-freezing-women-30s-40s-lack-of-eligible-men-knights-shining-armour> accessed 26 May 2018

[24] Susie Jacob and Adam Balen, ‘Oocyte Freezing: Reproductive Panacea or False Hope of Family?’ (2018) 79 British Journal of Hospital Medicine 200, 200

[25] Kylie Baldwin, ‘’I Suppose I Think to Myself, That’s the Best Way to Be a Mother’: How Ideologies of Parenthood Shape Women’s Use for Social Egg Freezing Technology’ (2017) 22 Sociological Research Online 1, 5

[26] Baldwin supra n25, 5

[27] Mark Tran, ‘Apple and Facebook offer to freeze eggs for female employees’ The Guardian (15 October 2014) <https://www.theguardian.com/technology/2014/oct/15/apple-facebook-offer-freeze-eggs-female-employees> accessed 24 May 2018

[28] Kylie Baldwin et al, ‘Running Out of Time: Exploring Women’s Motivations for Social Egg Freezing’ (2018) Journal pf Psychosomatic Obstetrics & Gynecology 1, 3

[29] Baldwin et al supra n28, 4

[30] ibid 4

[31] Baldwin et al supra n28, 4

[32] ibid 4

[33] Gurtin supra n23

[34] ibid

[35] ibid

[36] Eleni A. Greenwood et al, ‘To Freeze or Not to Freeze: Decision Regret and Satisfaction Following Elective Oocyte Cryopreservation’ (2018) Fertility and Sterility in Press

[37] Ariana Eunjung Cha, ‘Egg-Freezing Regrets: Half of Women who Undergo the Procedure Have Some Remorse’ (18 May 2018) The Washington Post <https://www.washingtonpost.com/news/to-your-health/wp/2018/05/18/egg-freezing-regrets-half-of-women-who-undergo-the-procedure-have-some-remorse/?utm_term=.46f0ecc0afcf> accessed 27 May 2018

[38] ESHRE supra n8, 4

[39] See, for example, current prices at the London Women’s Clinic in London: https://www.londonwomensclinic.com/about/prices/

[40] See, for example, current prices at Sims IVF in Dublin: http://www.sims.ie/treatments-and-services/prices.883.html

[41] Evans v United Kingdom (2007) 43 EHRR 21, para. 54

[42] Evans v United Kingdom (2007) 43 EHRR 21, para. 60

[43] Benjamin P. Jones et al, ‘The Dawn of a New Ice Age: Social Egg Freezing’ (2018) 97 Acta Obstetricia et Gynecologica Scandinavica 641, 644

[44] Petition to extend the 10-year storage limit on egg freezing <https://petition.parliament.uk/petitions/218313> accessed 27 May 2018

[45] General Scheme of the Assisted Human Reproduction Bill 2017, Head 22, 8 (a)(i)

 

Working with the people whose lives you research

Making co-production a reality: ExpertAge

 

peer facilitators

Two of Age NI’s peer facilitators

by Annie Melaugh McAteer and Marian Cinnamond

Background

In recent years there has been a strong emphasis on ‘service user involvement’ and co-production in research. There are many possible benefits: better quality research, innovation and broad dissemination channels to name a few. Having experience of co-production, through working with volunteer peer facilitators, I have experienced these benefits. In addition, the approach has helped me grow as a researcher and changed my approach to identifying questions and interpreting findings through the inclusion of older people in the research.

At Age NI we strive to put older people at the heart of everything we do, and as a result, we feel our approach to research should be no different. Different levels of co-production exist and we have found that involvement of older people, from conceptualisation to dissemination, is key in producing high quality, informed work.

This article outlines a model of co-production that we know works well for us (and of which we are very proud). We use this model to help shape and develop services and policy and it ensures the views of older people are heard. As a researcher I get a lot out of this approach, not least the opportunity to find out what really matters to older people.  Our peer facilitators also get a lot out of this experience,

‘As a peer facilitator I had the privilege of people telling me about experiences that had sometimes been very difficult for them and may have had a negative impact on their confidence and self esteem. I had known some people I interviewed for a long time and others not at all, but I was given insight into their lives which I would not have otherwise have had. This was an enriching and humbling experience for me. (peer facilitator feedback)

 

Older people are experts by experience

We are all getting older. Individually of course, but also as a population.1 And I think we should celebrate this and all doors it opens to new opportunities in later life. An important part of this is that people are given the opportunity to age well and enjoy later life. Older people face a range of barriers which can impact on ageing well including access to quality health and social care, access to information about the help they are entitled to, ageist attitudes and discrimination. It is these areas we most want to understand through our research. More recently we have been working to understand what makes a ‘good life’ for older people and how they understand the term ‘frailty’. Older people are their own experts, with lived experiences of what works and what does not and, as all researchers know, experts are the best place to start.

 

ExpertAge

The older people involved in developing our research are enthusiastic and dedicated volunteers. Their passion and insight helps us ensure our research is accurate and reflective of older people in Northern Ireland.

Co-production takes place through our ExpertAge team; a group of peer facilitators, supported by an Engagement Manager, who support our research in various ways. Those involved receive bespoke training around facilitation and data collection. The model is based on the understanding that people are more comfortable talking to peers than to professionals,

‘Many of us have a tendency to feel less judged or dismissed by people to whom we feel similar, or perhaps be better understood.’ (Feedback from peer facilitation)

Peer facilitators provide feedback on research approaches in terms of understanding and relevance. This helps us ensure we are getting to the core of the issue and doing it in a way that is accessible for older people. They provide insight into developing research within an ethical framework – for example, will asking this question cause distress, and if so, is it necessary or what would mitigate distress? They help us recruit participants, ensuring older people from a range of backgrounds are included, especially those who might belong to lesser heard groups; those who are isolated for example.

One of the most valuable aspects of peer facilitator involvement is their role in data collection. They support older people to complete questionnaires, and carry out one-to-one interviews. These peer to peer conversations allow for a more in-depth exploration of the areas being addressed, and our peer facilitators are able to take the time to spend with people, to do this at their own pace,

‘the interview was quite long, so we stopped for tea and cake in the middle, to give the person a rest’ (peer facilitator feedback)

We know that older people want to be heard, and that being listened to is an essential part of feeling involved and valued. Using co-production and supporting co-researchers, allows us to do this in a meaningful way.

Finally, our peer facilitators support dissemination of results. They provide feedback from their perspective about the data collection, they provide input into preliminary discussions around results and they participate as co-presenters in events to launch findings. Marian, a peer facilitator, co-wrote this post with me.

For me, co-production starts before the project and continues on afterwards. Co-researchers are part of the research team and the project benefits from their inclusion.  As a researcher I should support them, ensure they receive adequate training, brief and debrief them and build relationships. This all takes time, but in seeing the quality of the work delivered, I know it is worth it. And it isn’t just my view; over the last year we have worked with a local council and Public Health Agency using this model. To end, I would encourage others to adopt such an approach and put those impacted by research at its heart.

https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/articles/overviewoftheukpopulation/july2017

2 For an example of work the peer facilitators have been involved in see here

About Annie, Marian and Age NI:

Annie has a psychology background, graduating from her PhD at Queen’s University, Belfast in 2017. She currently works in the voluntary sector in Northern Ireland as Impact and Evaluation Manager at Age NI. Her research interests are in wellbeing, understanding the needs of older people and service evaluation. She is an advocate of co-production and includes older people in the development of her current work.

Marian Cinnamond: Marian is an Age NI peer facilitator and has been involved in several projects, supporting older people in Northern Ireland to share their views.

Age NI’s vision is a world where everyone can love later life. We provide a range of services to help support older people across Northern Ireland; Advice and Advocacy service provides support and information for older people; Wellbeing Services seek to improve the lives of older people, empowering them to live the lives they want and our Care Services provide care for those who need it. Our policy and influencing activities ensure that policy decisions made today support more older people in Northern Ireland to love later life. We also support sub regional older people’s networks and offer a wide range of volunteer roles. To find out more about Age NI you can see our website: http://www.ageuk.org.uk/northern-ireland