See the week in pictures.

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Ruth Faden with attendees.

An engaged crowd of 175 Johns Hopkins alumni, friends and guests packed the ballroom of the Four Seasons Hotel in Atlanta on May 2 to participate in a discussion with renowned bioethicist Ruth R. Faden, PhD, MPH, and hear her speak on the new spate of challenging ethical questions that are emerging as health care becomes individualized. Dr. Faden, the Philip Franklin Wagley Professor of Biomedical Ethics and director of the Johns Hopkins Berman Institute of Bioethics, gave a stimulating talk exploring ethical issues in the 1950s through the present time, with a glimpse toward the future.

Dr. Faden began her remarks with an overview and analysis of Rebecca Skloot’s best-selling book, The Immortal Life of Henrietta Lacks. Mrs. Lacks was a Johns Hopkins Hospital patient in 1951, and the cells from her cervical cancer tissue biopsies were used for research purposes. At the time, standard medical care did not include asking patients to provide consent for their tissue samples to be utilized for research. Mrs. Lacks’ cells became the first “immortal” cell line – meaning the cells would grow indefinitely outside the human body – and resulted in accelerating significant medical breakthroughs, including the polio vaccine, cancer therapies and the human papilloma virus (HPV) vaccine. Mrs. Lacks’ cells, which became known as HeLa cells, have been an essential global medical research tool for more than 60 years.

While Mrs. Lacks’ cells contributed to medical advances, her family did not learn about the existence of the HeLa cells for decades, raising serious questions. Dr. Faden argued that hindsight and analysis provide an opportunity to question the ethical dilemmas of consent and compensation, and opens wide an important debate for medical care today and in the future, made especially complex in an age of super technologies facilitating highly individualized medicine.

“It was very thought-provoking,” remarked Seneca Toms, A&S ’11. “It’s a controversial topic to talk about, especially when the speaker is coming from Johns Hopkins. If you take an objective approach and look at what happened, while there are some retrospective moral judgment issues, something came out of the HeLa cells that really benefited a lot of people. This continues to be a controversial issue, and there are things that even now will be clearer in the future.”

Johns Hopkins is taking a bold approach to the ethical questions that will confront researchers as personalized medicine becomes the standard of care in the coming decades. Through Johns Hopkins’ individualized health initiative, professionals from various disciplines are working together to address important and provocative topics such as:

* Will individuals freely donate their tissue for research without the expectation of compensation?

* Will collective action, where it is understood that the tissue samples provided by one individual may not yield information related to that person’s health but may have a benefit for the greater good, be something that Americans will agree to?

* How will collective action impact consent? Will Americans agree to a universal consent for tissue research with an option to opt-out?

* Will individuals agree to allow researchers access to their electronic medical records in order for scientists to understand the complete picture of health and disease? Will pairing of these records with tissue samples be consented to?

* What institutions will we as a nation trust to host these huge data sets and with these inherent responsibilities relative to terms of use?

Dr. Faden’s introduction of the Johns Hopkins individualized health approach elicited a dynamic and at times passionate discussion among the Atlanta attendees. Please see some of the comments we have already received and share with us in the comments below your thoughts on how ethics and individualized medicine will interact to allow medical innovations and breakthroughs to continue. What do you see as the biggest challenges? What role do individual citizens need to play in the discussion? What role is there for health systems? What role should the government play?

The property will be sold by the Johns Hopkins University Real Estate Office to create a permanent base of support for the Foreign Policy Institute (FPI). The FPI is the research arm of the school and seeks to develop knowledge and promote public awareness of issues in foreign affairs through practically oriented research and discussion.
 
The gift will establish the Betty Lou Hummel Endowed Fund. Betty Lou Firstenberger Hummel (1925- 2011) was a member of SAIS’s first graduating class in 1946. Widow of U.S. Ambassador Arthur W. Hummel Jr., she served alongside her husband during his multiple ambassadorial appointments to Burma, Ethiopia, Pakistan and China, among other posts, and was active in international issues throughout her lifetime.

The Betty Lou Hummel Endowed Fund will help underwrite operating costs and support creative programming and innovative research and discussion at FPI, enhancing the institute’s role as an incubator of new thinking and approaches to foreign policy challenges. The new endowment also will support opportunities by FPI to engage students and faculty more actively in its work.

John Freeman, Med '58, and Elaine Freeman

When Elaine and John Freeman, M.D., began to contemplate retirement, they took stock of a lifetime of professional accomplishments — his illustrious and influential career in pediatric neurology and epilepsy, and her three decades as the grande dame of communications for Johns Hopkins Medicine.

When they also took stock of their assets, they were more than pleasantly surprised to learn that, during their 70 combined years of employment at Johns Hopkins, a sizeable sum had accrued in their 403(b) retirement plan accounts.

“We were dumbfounded,” says John, Lederer Professor Emeritus of Pediatric Epilepsy, professor of Neurology and Pediatrics and founder of the pediatric epilepsy center now named in his honor. “With our modest lifestyle, we had more than sufficient funds for our retirement.”

Moreover, the Freemans learned from their financial advisor, because their contributions had been made with pre-tax dollars, their retirement plan assets would be heavily taxed if they designated their three children as beneficiaries.

They were faced with a happy conundrum.

John, who graduated from the School of Medicine in 1958, returned to Johns Hopkins in 1969 to create a pediatric neurology division. As he became engaged in discussions about the decision-making process for treating infants with spina bifida, he developed an interest in clinical bioethics that subsequently influenced how birth defects were perceived and treated. He later created and served as chair of The Johns Hopkins Hospital Ethics Committee, chaired the search committee for the first director of the Johns Hopkins Berman Institute of Bioethics, co-authored Tough Decisions: A Casebook in Bioethics and solidified a belief that the institution should adopt a more vigorous clinical ethics curriculum.

Elaine, who shared John’s belief, knew that more than passion would be needed to realize such a goal: “I said to John, ‘This curriculum is never going to happen unless someone gives the money specifically for it.’”

The couple, who have supported many charitable endeavors during their 55 years of marriage, envisioned a faculty position. “We didn’t have the money to endow a professorship or even an associate professorship,” John recalls. “But we could help pay the salary for a faculty member who would teach clinical ethics to young physicians.”

In 2005, the Freemans pledged the first of several outright gifts to fund a faculty position for four years, hoping they might find a way to maintain it in perpetuity. The boon of their retirement accounts provided that opportunity.

They worked with their financial planner, Johns Hopkins leadership and a representative from the Office of Gift Planning to design a bequest that will divide their 403(b) retirement accounts among several institutions, including the Johns Hopkins Berman Institute of Bioethics to permanently endow the Freeman Family Scholars in Clinical Bioethics, which allows junior faculty members to teach clinical ethics in the hospital and medical school.

“Doctors have to have some role in guiding decisions,” says John. “We ask parents and patients to make ethical decisions about which they have no experience whatsoever. If you ask them in the wrong way, they will say ‘Of course, we want to have everything possible done,’ which might lead to the patient’s being in a comatose state forever.

“My hope is that students and residents will be far more sensitive, more humanistic and in touch with different responses from patients and tolerant of different decisions.”

John Freeman and Maggie Moon, the first Freeman Family Scholar

Pediatrician and assistant professor Margaret R. Moon, SPH ’86, Med ’90, who was named the first Freeman Family Scholar, works with students and residents in a special voluntary program that provides the opportunity for these physicians-in-training to reflect on their practice and clinical ethics.

“The Freemans’ gift allowed me to start with a very open mind and take an expansive look at ethics education to develop innovative and responsive teaching,” says Moon. “Clinical ethics is a regular topic of conversation among our residents and in our hospital because of the Freemans’ generosity and leadership.”

“Working at Johns Hopkins for a long period of time allowed us, among other things, to know areas where a difference can be made,” John says. “We know there is a future in what we are funding, and it is wonderful to see some of that future realized while we are alive.”

On March 24, in celebration of World Water Day, Johns Hopkins alumni, parents and friends gathered in Chicago for a day inspired by President Daniels’ Day of Service. Partnering with a nonprofit co-founded by a Whiting School alumna, our volunteers mentored youth through an interactive virtual journey designed to raise awareness of the global water issue. See the day in pictures and read about it in the words of the people who were there.

“Surge was in my heart when I was a young child visiting India and it grew at Johns Hopkins. Once we realized one very simple fact — that we had so much — it was easy.”

— Shilpa Alva, Engr ’02, on co-founding Surge, a nonprofit that provided water to 31,346 people in seven countries in its first two years

“Carrying water in the race, the kids got it — that this is really not fair. Even though they won, they couldn’t feel good about it because the other team had so many obstacles. What we did today reminds me of the importance of experiential learning.”

— Jennifer McCormick, SPH ’09, on the relay race between the unencumbered team representing Australia and Germany and the Nigeria and Nepal team, who had to carry heavy water jugs and face other obstacles

“When we are thirsty, when we want to take a shower or wash our car, all we have to do is turn a handle and the water flows.

“Many people can’t even imagine that. Around the world today, more than 900 million people lack access to clean, safe water. That is three times as many people as live in the United States. More than 2 ½ billion people lack access to basic sanitation.

“Now, here’s the good news: We can solve this problem.”

— U.S. Sen. Dick Durbin of Illinois, on The Sen. Paul Simon Water for the World Act

“WOO-ha.”

— Volunteer, pronouncing “water” in Amharic, a language of Ethopia

“I met with my adviser as a freshman and told him I wanted to do research. He gave me a name and I was off. ”

— Brian Shell, Engr ’12, Westgate Scholar, explaining his undergraduate research work studying how to remove pharmaceutical compounds from drinking water

“Excuse me, I have to do my dance.”

— Shilpa Alva, when the music turned on to signal rotation to the next activity

“Just knowing that Johns Hopkins alumni are doing something like this is uplifting.”

— Mary Akchurin, A&S ’04

“I didn’t recognize the amount of water it takes to manufacture some of the stuff I commonly use — Orange juice, bread, eggs. The most profound was the amount used to make a steak. We don’t eat red meat all that often, but knowing this may give me even more pause in the future. “

—Robert Dillon, P ’11, on the 1,840 gallons of water consumed in the production of an 8-oz. steak

“I pledge to be mindful of my water use, as it is a precious resource that unites us all. I promise to make decisions that conserve water every day.

“I will teach others about the water crisis by sharing my global water journey with friends and family.

“This is my duty as a Global Water Citizen.”

—Pledge read aloud by everyone to close the day

See the day in pictures.

Photos by Justin Fincher and Nora George

“We wanted the proceeds from this event to make a difference,” says John Dierkes, A&S ’77, who not only chose to direct funds to the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, but in the summer of 2011 helped them open the Swim Across America Cancer Research Laboratory.

This space inside the Kimmel Center, led by clinician and researcher Luis Diaz, uses the funds from the Dierkes-led fundraising swim in Baltimore to apply cutting-edge technology and medical developments to harder-to-cure cancers like melanoma, pancreatic, lung and brain. “The Swim Across America lab helps us perform the research we need to push clinical trials forward,” said Dr. Diaz. “This lab is already playing a part in critical discoveries and the application of those discoveries to patients.”