Our mothers, ourselves and risk literacy

The web is on fire with Ms Angelina Jolie’s honest and unsentimental account of her elective, prophylactic double mastectomy, appearing in the New York Times. She writes about her mother, who died at 56, having suffered cancer for a decade. She also writes about how she is a carrier of the BRCA1 gene. Her risk profile, she writes, was estimated at “87 percent risk of breast cancer and a 50 percent risk of ovarian cancer”. This risk would manifest itself before menopause is reached.

Not for me to comment on how our mothers – living or not – continue to shape our lives. I lost mine when I was 4. As far as I am concerned, I will never find out what she may or may not have suffered from, had she lived to age 46 (which was the age at which Ms Jolie’s mother’s cancer was diagnosed, according to publicly available information). Or longer. Every day I live defies all risks I may or may not know of.

But in this age of “austerity”, and living in a country with a publicly funded healthcare system being ravaged by budget cuts and the looming threat of privatisation, I worry. Alas the NHS’s postcode lottery is all too well-known for us to hide from it.

When TV celebrity Jade Goody died of preventable cervical cancer at the age of 25, it increased the uptake of pap smears in the NHS. When Kylie Minogue made the news of her breast cancer public, there was a 20-fold increase in the uptake of mammograms and early screening. There may now well be a worldwide surge in the uptake for genetic testing for BRCA mutations, which may be attributable to Ms Jolie sharing her experience.

Which is not all bad news. An estimated 20000 breast cancer related deaths could be prevented every year in the UK, not all attributable to advance knowledge of genetic markers.

I am sure you all know everything I have written so far. So I come to my main point. It is both a policy concern and a societal concern.

Risk literacy in the general public is rarely if ever discussed, even as risk communication remains ever-present, slightly sensationalised, yet incomplete or poor. For instance, BRCA mutations are almost exclusively discussed as a risk factor for breast cancer, following which ovarian cancer. Why not discuss that BRCA mutations may almost double the risk of cancer of the fallopian tubes? Which can be detected early and treated.

We still haven’t fully explained, in plain English, what it means to have a risk of X% versus Y% of getting A or B type of cancer. Risk really is a two-part concept: an undesirable outcome and the probability that it will come to pass. The probability may be expressed in numerical terms — making it sound, to most people, very accurate and reliable, which may not be the case — or in generalised terms such as “negligible”, “considerable”, “very likely”. Thereon it is a case of how one’s own risk propensity matches up to the description of a risk. That is what decisions are often guided by.

Here’s a story. A friend of mine, who had her first child at age 34, was told she had 1 in 1200 chance of having a baby with Down’s Syndrome. She said she took the chance. She is a highly educated, mathematically literate, senior pharma industry executive and struggled to explain to me what it really meant. To take that chance. She finally said: “Whatever I get I shall deal with.”

So that is what it comes to. Dealing with it.

Ms Jolie dealt with her risk in a certain way and shared her decision in unsentimental language with the broader public. It will increase awareness about BRCA for sure, but will it lead to better-informed decisions? Hard to say. Not everyone who gets tested — with the myriad (if you will ignore the pun**!) of genetic testing firms mushrooming in the market — will have access to the sort of counselling Ms Jolie might have had access to. Increasingly the choice to get screened or not is being left to the patient, even as this review took place because too often women are informed of the benefits of screening but not the harms. Back to risk literacy then.

Ms Jolie’s candid sharing of her experience needs to ignite a debate on risk literacy — not just BRCA mutations, breast cancer, or preventative mastectomies.

I have a final point. Men get breast cancer too. Because the absolute risk is low, the increase in the chances of a BRCA mutation carrying man getting breast cancer by age 70 or beyond is dramatic. This is also the age, when a lot of medical and health insurance policies start to enforce exclusions on the insured. With institutionalised differences between how men and women are treated by the healthcare system, surely risk communication about BRCA should include the risks to men, shouldn’t it?

Of course, I care about the issue as it affects men — I have only one parent left and it is my father.

(** If you missed the pun please read this. As well as the history of the company. Thanks.)

Four For Friday (20)

This week’s readings are mainly about cultural themes – openness, archiving, sustainable thinking (yes, even in luxury!) and – in the week that welcomes Olympics to London –  performance enhancement.

Academic research should go from “filter, then publish” to “publish, then filter“.

How can museums preserve our digital heritage?

Rio Tinto (yes, them!) launches a sustainable jewellery collection. It is the only miner certified by the Responsible Jewellery Council at every stage of the pipeline.

British Medical Journal discusses the science of hydration and sports drinks, and the links between the industry and academia. You may be able to watch this BBC Panorama programme titled The Truth About Sports Products too.

 

Four For Friday (18)

This week’s interesting reads leaning towards culture and the web:

University of Bristol research finds that professionals do not realise their vulnerability online, that principles of professionalism apply to social networks, and that most do not understand privacy guidelines. Now there’s a surprise!

And on the subject of motivation and use of praise as a tool, Carol Dweck’s research finds praise may make a student avoid challenge. In other words, praise may have a significant cost to self-esteem and motivation. Fascinating read.

Joe Kraus of Google Ventures talks about slow-tech and how tech is creating a culture of distraction.

Finally, do you have a bunch of energetic, curious kids on your hands this summer? In London, look up GoToTech. In New Delhi, look up Newton Club for Kids. Yes, you are welcome!

Four For Friday (13)

This occasional series of good readings from around the web does not appear some weeks; other weeks I regret calling it “Four For Friday” because I have encountered more like fourteen or sometimes forty great readings. The readings are meant to be departure points for further thinking, not just as-is pieces. This week’s picks should send all cylinders we work on here – strategy, technology, investment and regulation – firing.

Do you nurse doubts about the power of the internet? Spend some time on this link over on the BBC. Related reading on what happens to persons who are incessantly on.

Very long, thought-provoking read on how 2010 was the year genomics experienced growing pains – with regulation, economics and litigation.

Ever considered Science and Anthropology at war? If the strategic impact of science and technology on human life concerns you, that link should leave you thinking very hard.

CDC’s informative eye-opener of a report on health disparities in the USA – link to the full report here (.PDF), a comment in the New York Times here.

“Women in tech”: what gives?

(Long post alert!)

The meme is old but the current phase may well have started with Tereza’s idea of starting an XX Combinator, an incubator for women entrepreneurs. New York based VC, Fred Wilson gave the idea wings on his blog. He was then quoted in a now-widely discussed Wall Street Journal article, in which Rachel Sklar criticised TechCrunch. That riled TechCrunch’s Michael Arrington who wrote a post arguing why women mustn’t blame men for their relatively scarce numbers in the tech entrepreneurs community. In my view, Arrington highlights a key point about women not putting themselves forward enough. It is borne out by many people’s experience, including people like Robert Scoble’s, who invite women and are open to approaches, but have seen few women turn up or promote themselves. A more specific – and actionable – point was made by Alan Patrick, who says that at the moment the low numbers of women may be a flowrate problem. Spoken like a true engineer, I say. Now before you point out that I have overwhelmingly quoted men’s point of view on the issue so far, here are some other views. From women. Cindy Gallop says nobody is blaming men, and that systemic solutions are needed. Jamelle Bouie writes “try harder” is not the answer, adding another voice to the chorus calling for systemic solutions.

So far so motherhood-and-apple-pie. Don’t we all know that systemic solutions are needed? We do. Don’t we all know that women are different from men – no implied normative labelling there – and therefore different approaches may be needed? We do. In all the widely read and most shared posts I cite above, we hear only three creative ideas: Scoble and Arrington asking women to come forward, and Tereza proposing an investment fund for women. I like Tereza’s idea, but as a minority myself, I am no fan of ghetto solutions or “specialist” offerings. I do not believe that positive discrimination of any kind helps women. Nor does positive discrimination or special dispensation of any kind help promote the cause of inclusiveness, going beyond gender segregation.

I also believe that “systemic solutions” have their place but can we really afford to sit around for another 25-30 years for these solutions to take effect? Calling for systemic solutions is also a get-out-of-jail-free card of sorts. Like the trolley problem, it makes it possible for us to distance ourselves from the myriad of moral dilemmas and the choices we make in our daily lives. What is needed is for us to take steps – in our families, in our neighbourhoods, in our communities – to ensure we capture the attention of young girls and attract them to science and maths for careers in science and technology.

Here’s my take on the issue. Most of it is borne out of my own experience as an engineer who diversified and has run her own business focusing on technology-led businesses for a decade now. All of the following requires us – who are upset by the state of “women in tech” – to make different decisions in our lives.

Agree on Definitions. And avoid self-limiting boundaries.

“The beginning of wisdom is the definition of terms”, said Socrates. Yes, another man, I note. One of the egregious things about this debate bubbling at the moment is that “women in tech” is mostly being narrowly interpreted as “women entrepreneurs who start companies, typically in the USA, and seek venture funding”. Isn’t that too limiting?

There are, for instance, numerous women biologists and with much innovation happening at the cusp of disciplines, physicists and engineers will find themselves working with these biologists with their special expertise. Are these not “women in tech”? An estimated 30% of engineers employed in India’s private sector are women. Granted not all of them start companies, but are they not “women in tech”? What about women leaders of science and technology driven businesses? Some, it may surprise you, did not have degrees in science at all. Are they not “women in tech”?

While the lament of women being relatively fewer in science and technology is not misplaced, the dimensions of that lament can be put in perspective, if we define “women in tech” more broadly. The broader perspective will also lend itself to more creative and wide-ranging possibilities for addressing the issue.

Oh, by way of some data, here are Fierce Biotech’s top 10 women in biotechnology – a “tech industry” that needs a solid grasp of science as well as of business cycles. The list does not include one of my picks for most inspiring women in tech: Kiran Mazumdar-Shaw, founder CEO of Biocon, an Indian biotech behemoth.

Eschew early gender stereotyping.

In the 18 years since I graduated from engineering, many of my friends have had children. I have had the chance to observe the children closely. With some stellar exceptions – and I have a working hypothesis for that, which I may write about another time  – most of my well-educated, professional friends have proceeded to imbue gender stereotypes in their children pretty early on. Girls are co-opted into baking, while boys are given errands including things like fixing their sisters’ bikes or polishing shoes. What’s wrong with baking? Well, nothing – I bake most weekends – since baking is a highly controlled chemistry experiment. But also one, where one pays a heavy price for tinkering and taking risks with the recipe. What has that got to do with girls in science? Well, research suggests that girls not being encouraged to tinker is directly linked to their not choosing science, maths and engineering subjects.

Now think of all the activities that are stereotypically considered “girlie” and “boy stuff”. Baking, cooking, sewing, knitting and most care duties, while allowing for some creativity, are not about tinkering. But computer games, opening and mending things, fixing bicycles, repairing fuses etc all require a lot of tinkering. Early gender stereotyping in bringing up girls does them no favours, if we are to address the “flowrate” problem of girls in science and technology.

What about my own experience? I didn’t tinker much as a child, but I was always allowed to be an apprentice to my father, who did tinker an awful lot. I learnt much by observing and then much more when I started living away from home at age 17. I have learnt to curb some of my desire to open things up but I can confidently say that I know intimately the insides of my car as well as my piano thanks to my fiddling and tinkering. I tinker with complex problems and issues in my mind longer than most people which may explain why I do not churn out posts on “hot topics” while they are hot!

Do we need role models? If yes, think laterally.

I started studying engineering in 1988. In India. About 18% of my class was made up of girls. Barring 3, who then proceeded to read for an MBA, all have remained in the workforce in “tech” careers in engineering, and in research and teaching. Most are in Silicon Valley, some are in India. Most studied for second and third degrees, many after their marriages, some while bringing up their children and managing their careers. Nearly all have children. On first glance, all odds were stacked against the emergence of this longitudinal pattern. But it is there for us to see.

I have never sought or cared for role models but if I had to pick, these women would be my role models. They remain committed to science and technology not only in their careers, but also take an open-minded approach to other pursuits they have undertaken in their lives. These, to me, are “women in tech”. Because they show how it is possible to be one. They can, and I have no doubt, do influence young girls around them positively.

For my part, I decided I wanted to be an engineer when I was about 8. I had, of course, been tinkering as an apprentice to my father. But more to the point, I followed the example of an older male cousin. He is everything I wanted, and still want, to be: an engineer, a sharp brain-box, a gifted cook, a whiz with a sewing machine (!), a talented musician. He now has two girls of his own – both are “women in tech” via engineering and medicine. One has recently started her own business in Canada. I find them inspiring and consider myself fortunate that I can mentor them and participate in their journeys.

Role models needn’t be far-away exotic characters about whom we read in magazines. They need to be picked from our lives. For their ability to show what is possible, and for their ability to mentor and guide young girls. The gender of the role model, I believe, is less important than what a young girl can learn from the role model.

Negotiate better to remove barriers in adult life, aka men and women need to cooperate.

I am not making this up. Women scientists do more housework than male scientists. But it is also true that male scientists regret limiting their parenthood choices than women scientists do. Sylvia Ann Hewlett’s research has found that at 40, 31% of men are childless. Her earlier research had found that 40% of successful women at 40 were childless. “So what?, I hear you ask. Well, perhaps women need to understand and respect that life for men in science and technology – and business – isn’t a bed of roses either. They make sacrifices too. In other words, there are some common pain points for men and women, and sustainable change can be better effected if solutions to these pain points are sought jointly.

For women already in the workplace, it is important to recognise that before we can negotiate harder and better deals for ourselves at work and outside our homes, we first need to negotiate better and fairer deals for ourselves at home. With the men in our lives. If we are lucky, we already have relationships and friendships based on common values. These relationships give us advice on and insight into complexities and motivations of people we meet in work situations.

In other words, women need to cooperate. With men. Women need sponsors and champions. To invest their time, money and social capital into our ideas. And to avoid the negative vibes that sometimes dominate women-only groups.

Accept that men and women are different. Life is better for it. Now let’s enable the choices these differences foster.

In a conversation with Alan Patrick (whom I mentioned earlier), I said to him: “Women have lives, men have jobs. Fact.” While I readily admit to the shade of hyperbole in that statement, it does contain much truth. Most women I know – including those in science and technology – seem to have rich lives. They have fulfilling, if sometimes challenging, work lives; they have relationships and families; they have rich social lives; they have outside interests such as culture or sport. Most men however have relatively simplified lives where work and weekends feature heavily. It is not because men don’t try. But my working hypothesis is that it is because men are worse victims of gender stereotyping than women are. It must be tiring for men to live up to these negative stereotypes.

May be to enhance the numbers of “women in tech”, we need to show them the possibility of a rich tapestry of careers. And we need to work to create structures – investment funds, mentoring programmes, whatever it takes – to enable such possibilities. These possibilities may not necessarily follow a set pattern but must allow for women’s different priorities. As life goes, women’s fertile years coincide with their early career years too. It makes sense, where possible, if women wish to start companies or businesses later in their lives, perhaps in their 30s or 40s.

I recognise that not all of these ideas will prove popular. But as a person who sees possibilities in cusps, confluences and convergences, I believe sustainable solutions to the “women in tech” problem will require us to take conscious, mindful, sometimes difficult decisions every day. For a long time. Now would be a good time to start.

Late edit: some excellent articles by women – and men – I found after publishing (I don’t have to agree with all I list below/ disagreement sharpens thinking!):

Stubbornella on Women in technology

Aparna on Empowerment begins at home

Jezebel on What do “where are the women” shitstorms achieve?

Leah Culver on Is there a gender divide in start-ups?

Jon Pincus gives some actionable advice to Arrington

JP Rangaswamy muses about inclusion in technology and discusses anchoring-and-framing

Rachel Sklar’s post on the current wave of the meme

Suzanne Lucas on taking responsibility

Geoff Livingston on mindfulness to find female speakers