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    The Case for Ending the Anonymity of Egg & Sperm Donations in the United States

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    Egg and sperm donations in the United States have long proceeded under the cloak of secrecy. Twenty-five years ago, when I first started interviewing patients who used donors to conceive a child, many intended parents struggled with whether eventually to tell their child about the nature of his or her conception. While some professionals in the fertility industry advised that this was a parent’s personal decision, others encouraged disclosure, and still others recommended never telling a child how they were conceived. The last approach dovetailed with the industry standard that required donor anonymity. In subsequent years, my research has led me to conclude that mandatory donor anonymity is problematic – not only for the children conceived with donor help, but also for donors themselves and the people who created their families with donor assistance.

    After a boom in the late 1980s and 1990s, the use of donor sperm and eggs continues to expand in the United States – and increasing numbers of donor-conceived adults are going to want access to their biological information, including access to the identities of the people who helped create them. The United Kingdom has abolished donor anonymity. Why has the United States not followed suit?

    How Does Anonymity Affect Donors and Donor-Conceived Children?

    Many professionals in the fertility industry maintain that mandatory open donor identity would reduce the number of people willing to come forward to provide eggs and sperm. In countries that have national registries and have abolished donor anonymity, these fears have not borne out. In the United Kingdom, the Human Fertilisation and Embryology Authority reports that the number of sperm donors has increased since anonymity was banned; and since ending donor anonymity, Australia and Sweden have also seen increases in donors volunteering.

    In the United States, given that donors are compensated – indeed, egg donors are substantially compensated – the financial incentive alone is enough to ensure that people will still come forward to provide gametes for other people’s children, even if their identity is revealed to the children born from their gametes. Many donors prefer an end to anonymity. In my current research project, I have to date interviewed over 90 donors and collected 190 online surveys. Only a handful of egg donors, I find, want to remain anonymous in perpetuity – yet the majority reported they were told anonymity was their only option.

    Many sperm and egg donors go to great lengths to meet their genetic children, turning to DNA tests, online registries, and ancestry websites in their searches. Meanwhile, the first generation of children conceived via banked sperm or donated eggs are now young adults, who have their own feelings about donor conception and their own desires for forging connection, or not, with their donors. Some experienced emotional fall-out from being told later in their childhood they were donor-conceived or discovering it themselves after having the truth was concealed for of their lives.

    In my conversations with donor-conceived people, those who seemed most at ease were told at a young age and continued to hear their conception story as they matured. People who were told as adolescents or later, or discovered the “secret” on their own, report feeling a sense of betrayal at having been lied to by the parents they were supposed to be able to trust. For families who decided not to inform their donor-conceived children, the secrecy appears to have been largely rooted in the stigma and shame many people feel about infertility and the inability to have a biological child.

    Dealing with the Downsides of Anonymity Falls to Individuals

    In a quest for identity, many donor-conceived adults report using a combination of techniques to find their donors. Some sign up on registries, such as the Donor Sibling Registry. This service charges a $200 lifetime fee for donors and donor-conceived people to sign up and search for matches, using the donor identification numbers that clinics, sperm banks, or egg donation agencies assign. Others have turned to free online sites – such as donorconception.com – that help donors, donor-siblings, and donor-conceived children find each other by combining donor information, direct-to-consumer genetic tests, and ancestry registries.

    Essentially, anonymity is already obsolete; U.S. policy simply has not caught up with modern technology. The rise of direct-to-consumer genetic testing increases the likelihood of donor-conceived children finding their genetic parents, whether the donor wants that to happen or not. If anyone in a donor’s family does a test and registers on a website like ancestry.com, chances are good a donor-conceived child can find them. While such consumer testing and ancestry sites do raise privacy concerns about the public availability of genetic information, they make it virtually assured that anyone can be found.

    The Need for a Donor Registry

    Many fertility industry professionals have voiced concerns about how a registry would function given U.S. patient privacy law. The industry’s fear that registries reduce donors has not borne out in other countries that have implemented them. And by now, offering anonymity as an option misleads prospective donors into believing that their privacy can be guaranteed, when it cannot. With anonymity increasingly a non-viable option, it is time to consider establishing a national registry for egg and sperm donors. Not only would such a registry make it easier for people to find biological kin, it could also provide other advantages:

    • A registry could keep track of the number of live births per donor in the same geographic area, to reduce the risk of unions between donor-conceived biological siblings.
    • For egg donors, a registry could track completed egg donation cycles to reduce the risk of donors going through more cycles than is considered safe.
    • A registry would allow researchers to track egg donor health to better understand complications and give women considering egg donation more information for their decisions.
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    Tober’s research focuses on the intersections between bioethics, reproductive health and technologies, inequality, and the commodification of the body. Her geographic areas of expertise include the United States, Iran, Spain, and the Middle East. Her research includes ethnographic work on the US sperm-banking industry, on single women and lesbian couples choosing sperm donors to create their families, on kidney sales in Islamic Republic of Iran, and the politics of family planning promotion and use among Afghan refugees and low-income Iranians in Iran. This article was written in collaboration with the Scholar Strategy Network.

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    Health

    Study Shows Immune Cells Against Covid-19 Stay High in Number Six Months After Vaccination

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    A recent study by Johns Hopkins Medicine researchers provides evidence that CD4+ T lymphocytes — immune system cells also known as helper T cells — produced by people who received either of the two available messenger RNA (mRNA) vaccines for COVID-19 persist six months after vaccination at only slightly reduced levels from two weeks after vaccination and are at significantly higher levels than for those who are unvaccinated.

    The researchers also found that the T cells they studied recognize and help protect against the delta variant of SARS-CoV-2, the virus that causes COVID-19. According to the U.S. Centers for Disease Control and Prevention, the delta variant — currently the predominant strain of SARS-CoV-2 in the United States — causes more infections and spreads faster than earlier forms of the virus.

    The study findings were first reported online Oct. 25, 2021, in the journal Clinical Infectious Diseases.

    “Previous research has suggested that humoral immune response — where the immune system circulates virus-neutralizing antibodies — can drop off at six months after vaccination, whereas our study indicates that cellular immunity — where the immune system directly attacks infected cells — remains strong,” says study senior author Joel Blankson, M.D., Ph.D., professor of medicine at the Johns Hopkins University School of Medicine. “The persistence of these vaccine-elicited T cells, along with the fact that they’re active against the delta variant, has important implications for guiding COVID vaccine development and determining the need for COVID boosters in the future.”

    To reach these findings, Blankson and his colleagues obtained blood from 15 study participants (10 men and five women) at three times: prior to vaccination, between seven and14 days after their second Pfizer/BioNTech or Moderna vaccine dose, and six months after vaccination. The median age of the participants was 41 and none had evidence of prior SARS-CoV-2 infection.

    CD4+ T lymphocytes get their nickname of helper T cells because they assist another type of immune system cell, the B lymphocyte (B cell), to respond to surface proteins — antigens — on viruses such as SARS-CoV-2. Activated by the CD4+ T cells, immature B cells become either plasma cells that produce antibodies to mark infected cells for disposal from the body or memory cells that “remember” the antigen’s biochemical structure for a faster response to future infections. Therefore, a CD4+ T cell response can serve as a measure of how well the immune system responds to a vaccine and yields humoral immunity.

    In their study, Blankson and colleagues found that the number of helper T cells recognizing SARS-CoV-2 spike proteins was extremely low prior to vaccination — with a median of 2.7 spot-forming units (SFUs, the level of which is a measure of T cell frequency) per million peripheral blood mononuclear cells (PBMCs, identified as any blood cell with a round nucleus, including lymphocytes). Between 7 and 14 days after vaccination, the T cell frequency rose to a median of 237 SFUs per million PBMCs. At six months after vaccination, the level dropped slightly to a median of 122 SFUs per million PBMCs — a T cell frequency still significantly higher than before vaccination.

    The researchers also looked six months after vaccination at the ability of CD4+ T cells to recognize spike proteins atop the SARS-CoV-2 delta variant. They discovered the number of T cells recognizing the delta variant spike protein was not significantly different from that of T cells attuned to the original virus strain’s protein.

    Although the study was limited because of the small number of participants, Blankson feels it pinpoints areas that merit further research.

    “The robust expansion of T cells in response to stimulation with spike proteins is certainly indicated, supporting the need for more study to show booster shots do successfully increase the frequency of SARS-CoV-2-specific T cells circulating in the blood,” says Blankson. “The added bonus is finding that this response also is likely strong for the delta variant.”

    Along with Blankson, the members of the study team from Johns Hopkins Medicine are study lead author Bezawit Woldemeskel and Caroline Garliss.

    This study was supported by the Johns Hopkins COVID-19 Vaccine-related Research Fund.

    The authors do not have financial or conflict of interest disclosures. 

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    Health

    Poverty, Racism and the Public Health Crisis in America

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    Although extreme poverty in the United States is low by global standards, the U.S. has the worst index of health and social problems as a function of income inequality. In a newly published article, Bettina Beech, clinical professor of population health in the Department of Health Systems and Population Health Sciences at the University of Houston College of Medicine and chief population health officer at UH, examines poverty and racism as factors influencing health.

    “A common narrative for the relatively high prevalence of poverty among marginalized minority communities is predicated on racist notions of racial inferiority and frequent denial of the structural forms of racism and classism that have contributed to public health crises in the United States and across the globe,” Beech reports in Frontiers in Public Health. “Racism contributes to and perpetuates the economic and financial inequality that diminishes prospects for population health improvement among marginalized racial and ethnic groups. The U.S. has one of the highest rates of poverty in the developed world, but despite its collective wealth, the burden falls disproportionately on communities of color.” The goal of population health is to achieve health equity, so that every person can reach their full potential.

    Though overall wealth has risen in recent years, growth in economic and financial resources has not been equally distributed. Black families in the U.S. have about one-twentieth the wealth of their white peers on average. For every dollar of wealth in white families, the corresponding wealth in Black households is five cents.

    “Wealth inequality is not a function of work ethic or work hour difference between groups. Rather, the widening gap between the affluent and the poor can be linked to unjust policies and practices that favor the wealthy,” said Beech. “The impact of this form of inequality on health has come into sharp focus during the COVID-19 pandemic as the economically disadvantaged were more likely to get infected with SARS CoV-2 and die.”

    A Very Old Problem 

    In the mid-1800’s, Dr. James McCune Smith wrote one of the earliest descriptions of racism as the cause of health inequities and ultimately health disparities in America. He explained the health of a person “was not primarily a consequence of their innate constitution, but instead reflected their intrinsic membership in groups created by a race structured society.”

    Over 100 years later, the Heckler Report, the first government-sanctioned assessment of racial health disparities, was published. It noted mortality inequity was linked to six leading causes of preventable excess deaths for the Black compared to the white population (cancer, cardiovascular disease, diabetes, infant mortality, chemical dependency and homicide/unintentional injury).

    It and other reports led to a more robust focus on population health over the last few decades that has included a renewed interest in the impact of racism and social factors, such as poverty, on clinical outcomes.

    The Myth of Meritocracy

    Beech contends that structural racism harms marginalized populations at the expense of affording greater resources, opportunities and other privileges to the dominant white society.

    “Public discourse has been largely shaped by a narrative of meritocracy which is laced with ideals of opportunity without any consideration of the realities of racism and race-based inequities in structures and systems that have locked individuals, families and communities into poverty-stricken lives for generations,” she said. “Coupled with a lack of a national health program this condemns oppressed populations such as Black and Hispanic Americans, American Indians, and disproportionately non-English speaking immigrants and refugees to remain in poverty and suffer from suboptimal health.”

    Keys to Improvement

    The World Health Organization identified three keys to improving health at a global level that each reinforces the impact of socioeconomic factors: (1) improve the conditions of daily life; (2) tackle the inequitable distribution of power, money and resources; and (3) develop a workforce trained in and public awareness of the social determinants of health.

    The report’s findings highlight the need to implement health policies to increase access to care for lower-income individuals and highlight the need to ensure such policies and associated programs are reaching those in need.

    “Health care providers can directly address many of the factors crucial for closing the health disparities gap by recognizing and trying to mitigate the race-based implicit biases many physicians carry, as well as leveraging their privilege to address the elements of institutionalized racism entrenched within the fabric of our society, starting with social injustice and human indifference,” said Beech.

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    Culture

    What Do You Know About Disability Cultural Competence?

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    Recently, I had the opportunity to give a webinar on disability cultural competence to social service workers, but was met with many blank stares. As a disabled social worker myself, I often notice that the disability community is not recognized as a cultural group. Disability is also not considered as a social identity in diversity considerations, despite the ways the community feels about it. Frankly, our field has a long way to go when it comes to developing disability cultural competence. Let’s see if we can change that.

    Why the We Need to Prioritize the Disability Community

    You may be asking yourself, why all the focus on disability? Well, the disability community comprises 26 percent of the adult U.S. population – that’s one in four Americans according to the Centers for Disease Control. Among children under the age of 18, estimates suggest that 4.3 percent of the population is disabled according to the U.S. Census from 2019. This means that social services workers are interacting with the disability community all over! It’s also important to note that disability transcends race, ethnicity, gender and other social identities, as seen in the graphic below (courtesy of Courtney-Long, Romano, Carroll, et al., 2017). So we need to remember to be intersectional in our  practice – these are not siloed communities.

    Courtesy of Courtney-Long, Romano, Carroll, et al., 2017

    Importance of Disability Identity

    I’d like to transition now to talking about the importance of having a disability identity. Some people identify as disabled from a cultural perspective. Some people are not even aware that this is an option and you can open their eyes to the world of disability as a resource for them. In other words, for some, this is a missed opportunity to connect to a supportive network. For others, it’s a choice not to identify as disabled either due to stigma, internalized ableism or other beliefs. The idea is that developing a strong disability identity is super helpful with your long-term well-being. And in order to do this, you have to both connect with the disability community and with disability culture. So what is that?

    What is Disability Culture?

     

    In short, disability culture is the “sum total of behaviors, beliefs, ways of living, & material artifacts that are unique to persons affected by disability.” It’s essential for social service workers to be tuned in to disability culture so they can leverage it to connect with their clients. And let’s be clear, disability culture does NOT consist of disability service programs. Where we really see disability culture come alive is on social media sites, such as Twitter and Instagram. You can follow some of the major disability culture hashtags to see the dialogues and debates that are hot in our community right now, such as: #DisabilityTwitter; #DisabilityVisability; #DisabilityAwareness; #IdentityFirst; #DisabilityLife; #Spoonie,#SpoonieLife, and more.

    You may notice that the last two hashtags included the word “spoonie.” This derives from “spoon theory,” which is an actual theory based on a metaphor about how much mental and physical energy a person has to accomplish their activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The disability community talks about how many “spoons” they have as a unit of measurement of energy – and sometimes refers to themselves as spoonies. Please note that in teaching you this, I am helping you to develop your disability cultural competence.

    How Build Disability Cultural Competence

    Other ways to build up your disability cultural competence are to check out the Disability Visibility Project, which tells the stories of diverse members of the community in wonderful ways. And there are a range of organizations, such as Sins Invalid, which founded the disability justice movement. You can also read the 10 principles of that movement in this short document. This will help you to tune in to the disability pride movement. We have a pride month and a pride flag too, it happens in July.

    When it comes to engaging in disability competent practice, we need to develop knowledge about disability culture and disability history. We can also consider taking the following steps to round out this competence:

    First, we need to examine our own attitudes about disability and engage in reflective practice around that. You can consider your own implicit bias about the disability community through Harvard University’s Project Implicit test about ableism, or through social worker Vilissa Thompson’s guide to checking your own ableism.

    Second, developing disability cultural competence over time also includes a careful look at the terminology we are using and respecting disabled people’s choice of identity-first language in many cases. You can read more about that here and throughout that site. The Harvard Business Review also has a thoughtful essay on why you need to stop using particular words and phrases. It’s a great resource and helpful read for many.

    Third, we also need to think respectfully about disability etiquette and how ideas play out in different parts of the disability community. One should presume competence about us – all of us! We ask that you respect our bodily autonomy, speak to the person and not their companion/interpreter, ask before you help, be sensitive about physical contact/equipment contact, don’t make assumptions about capacity, listen to us, don’t assume you know better and if you are in doubt about what to do, ask! Writer Andrew Purlang sums up his disability etiquette request as follows:

    • Don’t be afraid to notice, mention, or ask about a person’s disability when it’s relevant — but don’t go out of your way!
    • Offer to help, but make sure to listen to their response, respect their answer, & follow their directions
    • Don’t tell a disabled person about how they should think about or talk about their own disability
    • Don’t give unsolicited medical, emotional, or practical advice
    • Don’t make a disabled person responsible for managing your feelings about their disability, or for your education on disability issues
    • If you make a mistake, just say you’re sorry and move on. Don’t try to argue that you were right all along.

    Now What?

    Taken together, these steps, learning disability culture, and examining our own attitudes about disability, go a long way towards the development of disability cultural competence. But none of it will do any good if we are not fighting for disability access and disability inclusion, which are central issues for the disability community. Many people think that issues of access were solved by the passage of the Americans with Disabilities Act of 1990. But the implementation of that law is fraught and embattled, and there is lots of work to be done on the access front. Take a look at these simple guides below. They will go a long way in helping to engage the disability community and making us feel welcome! Above all, remember our movement’s rallying cry, “nothing about us, without us!”

    Website Accessibility

    Accessible Social Media Guide

    Meeting Accessibility

    Webinar Accessibility

    Public Event Accessibility

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