The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent For The Next Generation?

In 1951, a black tobacco farmer and mother of five named Henrietta Lacks died of cervical cancer at the age of 31. But before she died, the doctors treating her at Johns Hopkins took samples of her cervical tumor — and without her knowledge or consent those samples went on to become the most prolific human cells in medical research.

The cells, commonly referred to as HeLa cells, have helped research treatments for everything from HIV to cancer. But they have also become a cautionary tale about the importance of ethical standards in research: Lacks’ own family didn’t even know about her research legacy for over 20 years. When European researchers published the full genome transcript of HeLa cells without the knowledge or consent of her family earlier this month, they started a new chapter in that tale about the complex relationship between researchers and the privacy of genetic information.

It’s a complicated chapter, as Dr. William Pewen, Assistant Professor of Public Health and Family Medicine at Marshall University, and a former top health care adviser to the now retired Sen. Olympia Snowe (R-ME), noted to ThinkProgress:

“The release of Henrietta Lack’s genome illustrates the fact that genetic information isn’t an individual matter — it impacts family members as well. This underscores the need to ensure the rights of individuals and preserve the confidentiality of research data. Once patient privacy is lost, problems are simply compounded. Just how can today’s family members give consent for the next generation?”

It’s easy to argue that HeLa cells have saved lives, that their net result was good — but to say so without acknowledging that they are also the result of a highly suspect act that demonstrated disregard for the privacy and consent of a patient ignores the ethical standards that should define scientific research. Similarly, with genetic information, many concerns are raised: It’s very difficult, if not impossible, to guarantee the long-term confidentiality of genetic information and it can reveal much more about an individual and their relatives than basic medical records.

And while the public may generally agree that there are great benefits to be gained through genetic research, it’s important that the concept of medical progress is not put ahead of the informed consent of patients — especially, as Pewen also notes because “[i]n an age of technology advances and ‘Big Data’ analytics, it’s clear that medical data can be used in countless detrimental ways. That will simply be fostered if we allow ethics and human rights to be undermined by expediency.”

The researchers who posted the HeLa genome sequence have already retracted their paper due to complaints from the Lacks family, but as other have noted Lacks’ genome sequence can still be gleamed from other databases.

Genetic information is health information protected by Health Insurance Portability and Accountability (HIPAA) Act disclosure rules and there have been legislative attempts to resolve some of the issues raised by advances in genetic testing, such as the Genetic Information Nondiscrimation Act (GINA) of 2008, which also prohibited employers and health insurance companies from discriminating based on genes — but those regulations won’t help Henrietta Lacks’ descendants: The final rule modifying HIPAA to implement GINA and Health Information Technology for Economic and Clinical Health Act (HITECH) protections effective yesterday does “not protect the individually identifiable health information of persons who have been deceased for more than 50 years,” conveniently excluding HeLa cell information.

View the original article here

The rise of the second generation U.S. Latinos

By Joseph M. Humire and Fernando D. Menéndez, Cordob Group International LLC - 01/31/13 04:30 PM ET

In a warning to fellow Republicans, Sen. John McCain (R-Ariz.) urged the GOP to not overlook immigration reform, or else run the risk of having U.S. Latinos defect from their ranks as red states could become blue. Sen. McCain is right - immigration reform is a necessary and important first step - but in and of itself, is not enough if conservatives truly want to gain the trust and confidence of the fast growing U.S. Latino electorate. 

If they wish to turn the tide on U.S. Latinos, the GOP must show a deeper understanding of how this key demographic has evolved over time.

To begin, U.S. Latinos are not a homogenous group and the term “Latino” itself is a construction of U.S. origin to describe an otherwise extremely diverse population. The majority of U.S. Latinos are Mexican-American, Puerto Rican and Cuban-American with a growing group of Central and South Americans.  Cuban-Americans, given their history, tend to vote Republican, although they elected the first Cuban Democrat from South Florida, Joe Garcia, in the last election. Puerto Ricans have tended to vote Democrat, although pro-statehood Puerto Ricans lean Republican. Mexican-Americans have voted overwhelmingly Democratic for decades. This recent Congress has the largest number of Latino congressmen ever, with three Senators (all Cuban-American).

The use of Spanish or English at home varies from family to family, and from generation to generation. Growing numbers of U.S. Latinos practice evangelical Christianity, and not Roman Catholicism. Many of the indicators that once identified U.S. Latinos are changing rapidly, and most notable is the rise of the second generation of Latinos in the United States.

It was once believed that the U.S. political establishment should focus on first generation Latinos because as a single demographic they comprised the majority of the total U.S. Latino population, but these numbers have reversed over the turn of the century. According to the Pew Research Hispanic Center, as of 2010, second and third-plus generation Latinos comprise over 60 percent of the total U.S. Latino population, meaning that the majority of U.S. Latinos are now American-born, English-speaking and U.S.-educated.

The second-generation, many either born in the U.S. or well integrated, tends to be bilingual and multicultural. They bridge their parent’s past-focused, Spanish speaking (first) generation to their, eventually monolingual, future-oriented children’s (third) generation. Like other Americans, they are concerned with burdensome taxes, homeownership, jobs and business opportunities, and the education of themselves and their children, among other issues. But they maintain ties to documented, un-documented and non-naturalized relatives, so a lawful solution of immigration is important if at the minimum to stop the rhetoric against “illegal immigrants” which is perceived by the community writ large as thinly veiled racial intolerance and prejudice.

As Latino generations entrench themselves in the “American” way of life a significant cultural shift takes place, which must be understood in order to engage in effective political outreach. For instance, while second-generation U.S. Latinos sympathize with the struggles of their immigrant parents, their attitudes, identity and experiences are their own. Like many other ethnic groups, assimilation has not been easy for second generation U.S. Latinos; many have struggled to find a niche in the mainstream of U.S. society. On the aggregate, second generation U.S. Latinos have the second highest high school drop rate, highest teen pregnancy rate, and largest proportion of gang involvement of any U.S. born racial or ethnic group. 

Yet the “American dream” is still very much alive within this young generation, and the majority continue to pursue upward social mobility through access to education, serving our armed forces, entering the professional job market, and engaging the political process. If for nothing else, than to make their parents proud and position their children to inherit fewer struggles than generations before them. 

In politics, as in life, authenticity matters and the business community, as usual, has been ahead of politicians in tailoring their message towards U.S. Latinos, because they understand the generational differences between them. According to a recent Yahoo marketing study, most second-generation Latinos feel that public spokespeople (including politicians) do not accurately portray their ethnicity and if messaging is to be authentic it must reflect the bilingual and multicultural identity of this key demographic, whose buying power is projected to reach $1.5 trillion within a few years.

U.S. Latinos are the nation’s fastest rising electoral group, and as birth rates continue to outpace immigration rates the U.S. Latino population will shift more towards the second and third-plus generations. Understanding this is key to any political outreach effort. 

Therefore while immigration reform serves a practical purpose for a shrinking share of Latinos in the U.S., and a symbolic purpose for a growing share, this important debate needs to be complemented with a nuanced understanding of how acculturation and assimilation has been affecting the U.S. Latino experience.   

Humire, a Bolivian-American, and Menéndez, a Cuban-American are principals with the Cordoba Group International LLC, a strategic consulting firm in Northern Virginia that provides research, analysis and project management for a variety of U.S. and international clients.

View Comments

View the original article here

New Hawaii Senator: Climate Change The ‘Most Urgent Challenge Of Our Generation’

Hawaii Lt. Gov. Brian Schatz (D), who was yesterday named to fill the Senate seat vacated by the death of Sen. Daniel Inouye (D), wants to tackle an issue that has largely disappeared from Washington’s political agenda in recent years: climate change.

Speaking briefly after being named to the seat by Gov. Neil Abercrombie (D), Schatz voiced his concern over the threat climate change poses to the world if nothing is done:

“For me, personally, I believe global climate change is real and it is the most urgent challenge of our generation,” Lt. Gov. Brian Schatz (D), whom Hawaii Gov. Neil Abercrombie (D) tapped for the seat, said in brief comments Wednesday.

While climate change poses a threat to everyone, it is particularly dangerous for the Hawaiian Islands. Sea level rises could drown its beaches and the communities around them, and two of the state’s major industries — fishing and tourism — would feel an especially large impact.

Across America, industries and the environment have been devastated by droughts and natural disasters that a changing climate has exacerbated, but little has caught the attention of policymakers. While climate change-related legislation has stalled in the U.S. in recent years, the United Nations climate summit ended earlier this month with only “modest” movement toward a deal to address the problem on a global level.

View the original article here