Welsh "deemed consent" organ donation system shows promising results

The number of families agreeing that their loved ones’ organs can be donated for transplantation may be rising more quickly in Wales than other parts of the UK following the introduction of a groundbreaking new consent system, new figures suggest.

Health officials and ministers in Wales are encouraged by how the so-called “deemed consent” system is working and NHS Blood and Transplant (NHSBT) has said the picture in Wales is promising.

Under the new Welsh system, which came into force last December, residents are deemed to have consented to organ donation unless they positively opt out.

In June the Welsh government said the scheme had already saved dozens of lives after revealing that in the first six months, of the 60 organs that were transplanted, 32 came from people whose consent had been “deemed”.

New figures from NHSBT show that in the financial year 2015/16 the family consent/authorisation rate increased in Wales from 49% to 59%. Across the UK the rise was smaller: 58% to 62%.

Although the overall UK rate is higher, the more significant percentage increase in Wales last year may signal a change in attitude.

The number of living donors in Wales also increased by 20% to 49. Across the UK the number of such donors dropped by 2%.

Organ Donation week takes place across the UK from Monday. One priority in Wales is to get its messages across to young people and the Welsh government is mailing every new student arriving in the country this autumn to explain the system.

Under the Welsh system people who want to be an organ donor either register a decision to opt in or do nothing. For those who choose to do nothing, if they are 18 or over, have lived in Wales for more than 12 months and die in Wales, they will be regarded as having consented to organ donation.

Family consent, however, is still important because if a person has not opted in or out, relatives are still involved in the process and if they say their loved one would not have wanted their organs removed, a donation would not go ahead.

Dr Frank Atherton, chief medical officer for Wales, said he was pleased with how the scheme was working. “Things seem to be moving in the right direction,” he said. “It is encouraging. We’ve put a lot of effort into campaigns to help people understand their options. All that is starting to make an impact.”

He made it clear that the scheme was still in its very early days. The 2015/16 figures relating to family consent have to be treated with caution as the Welsh scheme was launched with only four months of the financial year to go and experts warn there could be fluctuations from year to year.

But Atherton said the move towards the system has certainly led to many more families discussing the topic. “Next year there will be a full evaluation of what the impact of deemed consent has been.”

Overall, the figures show there is still a long way to go if the UK target of increasing consent rates to 80% by 2020 is to be met. In Wales and in the UK as a whole, around four out of 10 families who were approached did not agree to organ donation taking place.

Last year in the UK, 466 patients died in need of an organ and a further 881 were removed from the transplant waiting list. Many of them would have died shortly afterwards.

Sally Johnson, director of organ donation at NHSBT, expressed optimism about what was happening in Wales. “We welcome the opportunities that the legislation and communications programme in Wales is providing in getting everyone in Wales to think about and talk about organ donation.

“We have been working closely with the Welsh government on the introduction of deemed consent and are working with them to make it a success. It’s early days, but things look promising.”

Case study

Kimberly Chard, 31, from Cardiff, who was born with cystic fibrosis, underwent a double lung transplant at the end of last year.

She said: “Every day I think of the selfless gift my donor and their family gave me, how they chose to save lives despite their loss. They are my heroes and I feel very blessed to have had the chance to live again. Having a transplant shows just how precious life is and what’s truly important. I will always treasure the future my donor and their family gave me.

“The new system has created an opportunity for everyone to get involved and discuss their choices and what their decision would be if they were ever in the situation to be able to donate their organs.

“By talking to their loved ones, people are making it so much easier for their family as they would know what their decision was and be able to honour their loved ones decision.”

Welsh "deemed consent" organ donation system shows promising results

Spanking, caning and consent play: how feminist porn frees women from shame

Can a feminist have rape fantasies?

According to feminist pornography producer Pandora Blake, who runs the fetish porn site Dreams of Spanking and frequently portrays fantasies of “non-consent”, the answer is a no-brainer. “Absolutely.”

The general consensus in the feminist porn movement is that no fantasy, no matter how anti-feminist the subject matter appears to be, is off limits. To tell a woman what she is and is not allowed to be turned on by is just about as anti-feminist as it gets.

Related: What should you tell your kids about porn?

“Removing shame from hardcore BDSM desire and rape play and age play and all of the kinky taboos that women just have not been allowed to like ever, that’s the kind of stuff that really draws me into the feminist porn movement,” says Courtney Trouble, the producer behind Trouble Productions and a past Feminist Porn Conference keynote speaker.

“If we come out and say ‘I have a rape fantasy,’ it’s like, ‘Whoa, you are broken,’” Trouble says. “That’s the conversation, and it just needs to change.”

Feminists routinely fight for sexual agency – a woman’s right to make decisions about her own sexuality, including when and with whom to have sex, and when, if ever, to get pregnant. Feminists traditionally rebel against the forces that would hem in these rights: the puritanical voices that say that a woman who enjoys sex is a slut, that would restrict access to contraceptives, that claim that dressing provocatively is inviting rape.

Following that logic, feminists argue they shouldn’t invoke shame around the sexual fantasies of others – even if those fantasies include images of kink and domination, or even rape.

“There’s a clear distinction between fantasizing about being coerced, and actually being coerced,” Blake says, explaining that just because she has (and depicts) dark fantasies doesn’t in any way mean that she’s endorsing real-life nonconsensual sex acts.

“In some cases, people’s porn preferences contradict who they are in the world – as responsible people who are committed to justice and equality,” says Tristan Taormino, a feminist porn producer, sex educator, and organizer of the annual Feminist Porn Conference in Toronto. “And I’m OK with that.”

Taormino’s own porn focuses on female enjoyment, on diversity of bodies, and on the comfort and authentic expression of her performers. She often subverts the tropes viewers might expect to find in porn.

“Certainly there are things in mainstream porn that I think are stereotypical, or repetitive, boring, or even offensive,” Taormino told me, “but the answer is not to shut down porn. The answer is to make more porn.

“Most mainstream porn revolves around the ever-present erection,” she says, “which speaks volumes about how it really revolves around male pleasure, male desire, male fantasy. So I’ve shot scenes where a male partner will make a woman come with his hands, mouth or a toy without ever taking his pants off.”

She also includes scenes where women initiate sexual encounters, or where actors direct each other, rather than everyone seeming to know what they’re doing at all times. No pizza boys show up at the door only to mobbed by a gaggle of waiting co-eds. She makes a point to emphasize consent and mutual enjoyment.

Trouble’s porn also frequently focuses on subverting expectations set by mainstream porn. As a plus-sized performer who has been asked by mainstream producers to appear in porn with phrases like “chubby chaser” in the title, or asked to eat cake in porn scenes, Trouble delights in making porn where fat people are depicted as desirable. And while mainstream “lesbian porn” usually consists of scenes where stereotypical, feminine, straight female actors perform sex acts on each other for the enjoyment of straight male viewers, Trouble shoots girl-on-girl scenes with lesbian viewers in mind, and with butch actors as well as femme.

The feminism of Trouble and Taormino’s porn isn’t limited to the content – they are also strongly committed to a safe and comfortable work environment, fair pay, and a creative voice for their actors. This behind-the-scenes work is especially important for porn like Blake’s. While Blake doesn’t believe that the content of her work is at odds with her feminism, where it gets complicated, she says, is in portraying and sharing those fantasies without promoting actual violence toward women. In a world where porn is the de facto sex education for any teenager with an internet connection, socially responsible producers have to think not only about what will get people off, but what people will learn.

Blake says that making a big disclaimer about consent in the beginning of a film would break the spell of the fantasy, but the negotiation of boundaries that’s part of any healthy BDSM still needs to happen.

The Dreams of Spanking site includes tons of behind-the-scenes footage that shows what happens when someone calls cut (which she encourages her performers to do if they need or want to), or how the scene really does stop when someone uses a safe word. Rather than to-camera interviews where performers can feel like they’re on the spot to say the right thing (“I’ve lied in that situation,” she says), the Dreams of Spanking behind-the-scenes footage shows what really happens on her sets, so that viewers can see that everyone involved is a willing and enjoying participant.

Blake says she only casts people who are kinky in their real lives, whom she meets through the BDSM scene, to make sure that they know what they’re signing up for and that they’ll genuinely enjoy it.

“In a way,” she says, “I’m filming a live BDSM scene,” as opposed to actors depicting BDSM. “It’s about taking your authentic experience and turning it into a performance.”

Blake says that she’s always been kinky, since long before she knew what that meant. She remembers reading the descriptions of canings in Roald Dahl’s autobiography and being simultaneously fascinated and ashamed of her response.

“Even then I knew that it was not accepted to be fascinated by descriptions of other people’s pain,” she said. “All of us have to unlearn that received shame before we can enjoy ourselves and our sexuality, even if it’s the most pleasure-based sexuality, let alone when it’s anything outside of the norm.”

Related: Feminist pornographer wins right to reinstate sadomasochism website

She first discovered spanking as an erotic activity when she was a teen reading erotic fiction, but it wasn’t until she started exploring the world of online porn that she realized she wasn’t the only one who was turned on by the idea of spankings or canings more severe than playful smacks.

“What’s hot about spanking is the fear of it, the anxiety and anticipation of what’s coming,” Blake says. She likes to create scenes not where spanking just comes out of nowhere, but where a character anticipates it, “like a schoolgirl who knows she’s going to get a caning after school and can’t think about anything else and she’s asking her friends how bad it’s going to be, if it’s going to hurt.”

It’s not unfeminist to be a female submissive, Blake says, but it’s unfeminist to assume that someone in the BDSM scene is a submissive just because they’re a woman. She says that people in the BDSM scene, like people everywhere, have internalized ideas of gender norms, and that that’s part of what she’s trying to fight with Dreams of Spanking.

“The way to have sex in a feminist way is with consent, communication, and respect,” Blake says. “So if it’s possible to have sex that way, it’s possible to BDSM in that way, because they’re the same, really.”

Spanking, caning and consent play: how feminist porn frees women from shame

Time for Informed Consent: The FDA Considers Hazards of Power Morcellators in Fibroid Surgical treatment

Last week, a panel convened by the FDA deliberated over the risks and benefits of using power morcellators in gynecological surgery. In April, the agency issued an alert cautioning providers that the tools could spread malignant cells from an occult malignancy. The panel agreed that there’s no way for a doctor to predict, prior to surgery, if a uterine fibroid is completely benign.

Late last year, a Boston surgeon drew public attention to the potential dangers of the power tools. His wife – an anesthesiologist and mother of six – underwent what was considered a routine operation, as reported by the WSJ. Unfortunately it turned out that a fibroid within her uterus contained malignant cells; it was a leiomyosarcoma. She now age 41, needed an extensive course of chemotherapy to improve her odds of survival.

This case matters because fibroids commonly affect women in their thirties, forties and fifties. These growths of smooth muscle can cause pain, pressure on the bladder or rectum, and bleeding with consequent anemia. Recently the FDA estimated that the risk of a concealed, malignant sarcoma as 1 in 352 among women having surgery for what’s thought to be a benign uterine fibroid.

Hysterectomies and myomectomies to remove fibroids represent a large fraction of gynecological surgery. Power morcellators, which can mince a tumor efficiently, first entered practice in the early 1990s. A surgeon can use this sort of device laparoscopically – potentially and probably reducing a patient’s scar, time in the hospital and complications of a longer surgical procedure.

My first concern is that  Both are precious resources. It’s easier and quicker for a surgeon trained to a power morcellator than to carefully carve out a benign fibroid tumor (or several) from a woman’s uterus. So it may be a matter of economics, rather than what’s best for the patient.

pathology from a uterine leiomyoma (fibroid); PLoS  2012; 7(11) e50058

My second, and possibly greater concern, is that Many hospitals would blow off charges raised by ordinary patients as “hypothetical.” They’d dismiss, or inadequately note, untoward events that are rare but real.

You have to wonder how many side effects of approved devices go unchecked, because of the limits of FDA’s handling capabilities, conflicts of interest, and doctors’ understandable fear of law suits. The FDA encourages doctors to report bad outcomes after use of this sort of device to its MAUDE database, but in general it hasn’t required notification by providers. It’s hard to imagine that most surgeons or hospitals would volitionally report that a device used may have caused a woman’s malignant sarcoma cells to disseminate during a surgical procedure.

The FDA panel hasn’t yet issued a formal statement regarding the use of power morcellators in uterine fibroid surgery. Not surprisingly, gynecologists on the panel challenged the statistic of 1 in 352 – saying that the real risk of cancer was significantly lower than that number. But they agreed that women having the procedure “should sign a written consent form stating they understand the serious risks of laparoscopic power morcellation…”

This is a story about informed consent, and it’s not just about this particular procedure. Rather, it’s about physicians’ knowledge and representation of probable outcomes to patients. In my experience, doctors tend to minimize risks that they haven’t observed in their personal experience or hospital. Given their real time constraints, and the fact – as evident by this case – that not all bad outcomes are reported, physicians may not be aware of a procedure’s potential harms. They may genuinely not believe it to be true, or they may not acknowledge it, due to various biases to which doctors are prone.

The solution involves greater transparency and reducing conflicts of interest at the FDA, and among doctors who perform and prescribe treatments anywhere. It demands rigorous continued medical education of senior physicians in all fields. Ultimately it requires that hospitals and administrators afford surgeons and all physicians time to read, to do their work carefully, and to answer patients’ legitimate questions.

Time for Informed Consent: The FDA Considers Hazards of Power Morcellators in Fibroid Surgical treatment